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New CA Diagnosis

I am reaching out to get some support and information after getting my prostate cancer diagnosis.  I am a 59 year old that recently was diagnosed with an aggressive form of prostate cancer.  Because my father died of prostate cancer at age 79, I have monitoring my PSA for quite some time.  Last year my PSA levels started to rise and earlier this year I had an MRI fused biopsy which detected cancer in four out of ten samples (Gleason 3+4).  I also had a Decipher genomic test of the biopsy samples that rated the cancer as aggressive, so my next decision is what type of definitive treatment.  My urologist has recommended either radical prostectomy or external beam radiation within the next 6 months.  I am leaning towards the surgical removal via robotic surgery, but I am very fearful of urinary inncontenence.  I am not sure that I would handle inontenence well and would consider suicide if I had long term incontenence.  I am very  active and spend a lot of time outdoors as a skier, backpacker, and tennis player.  I am a healthcare professional myself, and I have two busy offices and am a solo practicioner.  I cannot afford to be out of my office more than about 2 weeks as my staff have already been out of work for 2 months due to the COVID shut down.  My stress level is incredibly high, as I have had to keep my practice running through the COVID crisis and now I have to plan to be out for another 2-3 weeks!  My wife is also a healthcare professional and is in denial about my diagnosis and does not want me to consider surgery or radiation, she wants me to wait and monitor through active surveilence.  I would love to get some outside perspective on my difficult situation.

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Comments

  • Flyer83948
    Flyer83948 Member Posts: 34
    Continence

    I was 59 last year when a got diagnosed with Gleason 6 (3+3) thru a biopsy. After much going back and forth in my mind about whether to choose active surveillance or get treatment, I finally choose to go with a robotic prostatectomy. Post-operation patholody report came back and upgraded my case to Gleason 7 (3+4, with the 4 being about 10% involvement). As for continence, my doctor said that he expected me to reach about full continence in about 3 months after surgery. I would describe my actual case as more like "99%" continence 4 months after surgery. Pretty much full control except when I cough or sometimes exercising with a few drops of leakage, but can't complain. I wear pads just in case. 

     

    My 2-cents is that you shoudl probably seriously consider some kind of treatment. Like your doctor said when he recommended treatment within the next 6 months, you have some time to decide since prostate cancer tends to be slow-moving. Maybe you can think of some convenient time in that time period when you can afford to take time off work for treatment and some recovery? The holiday season will be coming up with Thanksgiving about 4 months away. Maybe sometime around the Thanksgiving-Christmas holiday season when work tends to slow down would be a good time?

  • Sw1218
    Sw1218 Member Posts: 65
    Your Diagnosis

    hi, friend. i'm so sorry about your diagnosis. with a diagnosis such as a 3+4, i would certaily recommend treatment. here are a few things you can do over the next six months.

    1. you should call john hopkins labs and have them give you a second opinion. the number is 410.614.6330  410.955.2405 and ask for, ms. jackie. tell her you'd like dr. john epstein to take a 2nd look at your results. make sure you ask for a copy. if you live out of the state of maryland, it will cost you $275. they won't bill you right then, but they will bill you. john epstein, is one of the top pathologist to look at prostate cancer. 

    2. i would look into HDR brachytherapy. that's the type of treatment i had. 

    3. purchase a book "The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer" this book will explain prostate cancer to you on a level thats very easy to understand and will provide you with all of the options you may be a good candidate for. 

    in other words you want to use this time to research and DO NOT allow any doctor talk you into a treatment without having an understanding of the pros and cons.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **
    edited July 2020 #4
    .

    First 3+4 is generally considered intermediate not aggressive cancer

    I wonder why only 10 cores were taken.

    You mention that you had a mri directed biopsy. Was the biopsy machine 3 dimensional which is able to lock into mri results or was it 2 dimensional where the urologist used his best estimate of where the cancer was

    In the biopsy results, how extensive was the cancer that was found, that is what percent of each core was cancerous. This is important for determining the nex step.

    Did the MRI use a Tesla 3.0 or 1.5 magnet. The T3 MRI is more definitive and is better able to find extracapsular extension which is critical to a treatment decision

    Depending on the answers to the above questions an pet scan may be needed. There are different types of pets and, some better than others.

    There is a difference between pathologists. You want a world class pathologist to give a second opinion. The above poster recommended jon Epstein who is world class. Simply contact your doctors office to arrange for the test. If requested by your doc, insurance may cover. At any rate everything is based on these numbers and you need to get a second opinion of the pathology 

     Please list your psa’s

    what did the digital rectal exam indicate finger wave

    in the mri there is something called a pirad. What was the pirad numbers

  • PayneOrtho61
    PayneOrtho61 Member Posts: 15
    edited July 2020 #5

    Continence

    I was 59 last year when a got diagnosed with Gleason 6 (3+3) thru a biopsy. After much going back and forth in my mind about whether to choose active surveillance or get treatment, I finally choose to go with a robotic prostatectomy. Post-operation patholody report came back and upgraded my case to Gleason 7 (3+4, with the 4 being about 10% involvement). As for continence, my doctor said that he expected me to reach about full continence in about 3 months after surgery. I would describe my actual case as more like "99%" continence 4 months after surgery. Pretty much full control except when I cough or sometimes exercising with a few drops of leakage, but can't complain. I wear pads just in case. 

     

    My 2-cents is that you shoudl probably seriously consider some kind of treatment. Like your doctor said when he recommended treatment within the next 6 months, you have some time to decide since prostate cancer tends to be slow-moving. Maybe you can think of some convenient time in that time period when you can afford to take time off work for treatment and some recovery? The holiday season will be coming up with Thanksgiving about 4 months away. Maybe sometime around the Thanksgiving-Christmas holiday season when work tends to slow down would be a good time?

    Thank you for your input.  I

    Thank you for your input.  I am coming to terms with the idea that I will need to plan treatment in the coming months and I am going to get some consultations with both a surgeon and a radiation oncologist.  I am just having a difficult time with the idea of incontinence.  I almost feel like this surgery will automatically make me feel like am 10 years older than I feel now.  I associate incontinence with someone that is more like 70 years old and I still feel like I am in my 40s.  I know this is wrong, but I am just having a very hard time with it.  I don't want any of my activities to be curtailed by the surgery and when I think about it I get very angry.  I have been in practice for 30 years and I have never missed a day of work for an illness.  My wife says I am a workaholic, but I get anxious when I am not doing something related to my work, and I can't see myself sitting at home for 3 weeks. I have so much to live for, my daughter is in her residency and will join my practice in a year.  I was hoping I could put off surgery until she joins me, but this was all blown out of the water last week when my urologist told me I have a high grade cancer and that I need to do something in 6 months.

  • PayneOrtho61
    PayneOrtho61 Member Posts: 15
    edited July 2020 #6

    .

    First 3+4 is generally considered intermediate not aggressive cancer

    I wonder why only 10 cores were taken.

    You mention that you had a mri directed biopsy. Was the biopsy machine 3 dimensional which is able to lock into mri results or was it 2 dimensional where the urologist used his best estimate of where the cancer was

    In the biopsy results, how extensive was the cancer that was found, that is what percent of each core was cancerous. This is important for determining the nex step.

    Did the MRI use a Tesla 3.0 or 1.5 magnet. The T3 MRI is more definitive and is better able to find extracapsular extension which is critical to a treatment decision

    Depending on the answers to the above questions an pet scan may be needed. There are different types of pets and, some better than others.

    There is a difference between pathologists. You want a world class pathologist to give a second opinion. The above poster recommended jon Epstein who is world class. Simply contact your doctors office to arrange for the test. If requested by your doc, insurance may cover. At any rate everything is based on these numbers and you need to get a second opinion of the pathology 

     Please list your psa’s

    what did the digital rectal exam indicate finger wave

    in the mri there is something called a pirad. What was the pirad numbers

    I see from your posting you

    I see from your posting you have had a long journey with PCa, so I value your insight.  

    I felt that number of cores was on the low side from what I have read, but I assumed that because the MRI detected the suspicious areas, they targeted those areas in question.

    The MRI was 3 dimensional and was fused with the ultrasound during the biopsy. The following is a description of the MRI used: Multiplanar T1, T2, and diffusion weighted MR images were obtained through the pelvis on a 3 Tesla magnet using a pelvic phased array coil..Dynamic post-gadolinium images were acquired following the intravenous administration of gadolinium. 3D post-processing and segmentation of the prostate was performed in an independent workstation (DynaCAD) in preparation for possible MRI-ultrasound fusion biopsy with UroNav.

    The biopsy was performed by a well-known major cancer center in my area.  The extent of the cancer that was found in the sample that was a Gleason 3+4  was 22% and only 5% of the cancer was greater than 3.  Below is the scoring of the samples taken:

    Specimen A - right apex

    1 of 2 cores contains carcinoma. The total length of tumor in all of the cores is 5 mm. The total length of tissue in all of the cores is 23 mm. The percentage of the tissue involved by tumor is 22%. The percentage of tumor greater than Gleason pattern 3 is 0%. Perineural invasion is not present. No extraprostatic tumor is seen.

    Specimen B - right mid gland

    2 of 2 cores contains carcinoma. The total length of tumor in all of the cores is 12 mm (discontinuous tumor foci spanning 12 mm of tissue). The total length of tissue in all of the cores is 36 mm. The percentage of the tissue involved by tumor is 33% (discontinuous tumor foci spanning 33% of tissue). The percentage of tumor greater than Gleason pattern 3 is 0%. Perineural invasion is not present. No extraprostatic tumor is seen.

    Specimen H left anterior

    1 of 1 core contains carcinoma. The total length of tumor in all of the cores is 11 mm. The total length of tissue in all of the cores is 16 mm. The percentage of the tissue involved by tumor is 69%. The percentage of tumor greater than Gleason pattern 3 is 0%. Perineural invasion is not present. No extraprostatic tumor is seen.

    Specimen J US right apex

    2 of 3 cores contain carcinoma. The total length of tumor in all of the cores is 6 mm. The total length of tissue in all of the cores is 27 mm. The percentage of the tissue involved by tumor is 22%. The percentage of tumor greater than Gleason pattern 3 is approximately 5%. Perineural invasion is present.

    No extraprostatic tumor is seen.

    My PSA in the first part of last year was slightly above 4 so my MD wanted to retest 4mo later, which came back at over 6.  He felt I may have had prostatitis, so we tested again in October of last year and it was 4.16.  I have never had a positive digital rectal exam, but because they detected the tumor on the MRI the urologist has scored the cancer as cT2a.  When the initial biopsy came back the urologist felt I would probably be placed on active surveillance based upon the extent of the cancer in the core samples pending the results of the Decipher genomic test.  When he got the results back from the Decipher test he did a complete 180 degree change and recommended surgical removal or external beam radiation.  He said that my Decipher score, at .67, was very high and I had a significantly increased risk of aggressive prostate cancer.  My MRI shows no involvement in surrounding tissues, seminal vesicles, surrounding bone, bladder, lymph nodes, or rectum.  My PI-RADS v2 score is 3.

    I am scheduled to meet with a top-notch surgeon (He is supposed to be one of the best on the West Coast for robotic surgery) this coming week and a radiation oncologist in the coming weeks.  Both referrals work at the major cancer center near me, so I am sure I am in good hands.  I think it would still be a good idea to get another pathologist to look at my biopsy, so I think sending it to Epstein might be a good way to go.

     

  • lighterwood67
    lighterwood67 Member Posts: 305 **
    edited July 2020 #7
    Surgery/Radiation

    Surgery or radiation, seems to be where you are at.  Both can be curative (actually cure the cancer).  My cut on this is to make sure that you understand what is happening during the surgery.  I will use me as an example.  RARP 3/18, 67 years old at the time, (prostate removed (gleason 4+3) seminal vesicles removed, some lymph nodes removed, bladder neck reconstruction), urethra shortening, nerve sparing).  These physical parts are not coming back.  You need to understand the full impact of their removal.  Status:  PSA undetectable; fully continent (no depends, no pads, no thins); sexually active to about 80% with no add-on, with add-on 100% (viagra (sildenafil).  I did not elect the radiation treatment.  I did consult with a radiation onocologist.  Just remember this is your decision.  Make sure you weigh out all the side effects of both types of treatment.  You need to also weigh out, if the cancer returns, what are your options based on the treatment you elect.  Anyway, good luck on your journey.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,688
    edited July 2020 #8

    I see from your posting you

    I see from your posting you have had a long journey with PCa, so I value your insight.  

    I felt that number of cores was on the low side from what I have read, but I assumed that because the MRI detected the suspicious areas, they targeted those areas in question.

    The MRI was 3 dimensional and was fused with the ultrasound during the biopsy. The following is a description of the MRI used: Multiplanar T1, T2, and diffusion weighted MR images were obtained through the pelvis on a 3 Tesla magnet using a pelvic phased array coil..Dynamic post-gadolinium images were acquired following the intravenous administration of gadolinium. 3D post-processing and segmentation of the prostate was performed in an independent workstation (DynaCAD) in preparation for possible MRI-ultrasound fusion biopsy with UroNav.

    The biopsy was performed by a well-known major cancer center in my area.  The extent of the cancer that was found in the sample that was a Gleason 3+4  was 22% and only 5% of the cancer was greater than 3.  Below is the scoring of the samples taken:

    Specimen A - right apex

    1 of 2 cores contains carcinoma. The total length of tumor in all of the cores is 5 mm. The total length of tissue in all of the cores is 23 mm. The percentage of the tissue involved by tumor is 22%. The percentage of tumor greater than Gleason pattern 3 is 0%. Perineural invasion is not present. No extraprostatic tumor is seen.

    Specimen B - right mid gland

    2 of 2 cores contains carcinoma. The total length of tumor in all of the cores is 12 mm (discontinuous tumor foci spanning 12 mm of tissue). The total length of tissue in all of the cores is 36 mm. The percentage of the tissue involved by tumor is 33% (discontinuous tumor foci spanning 33% of tissue). The percentage of tumor greater than Gleason pattern 3 is 0%. Perineural invasion is not present. No extraprostatic tumor is seen.

    Specimen H left anterior

    1 of 1 core contains carcinoma. The total length of tumor in all of the cores is 11 mm. The total length of tissue in all of the cores is 16 mm. The percentage of the tissue involved by tumor is 69%. The percentage of tumor greater than Gleason pattern 3 is 0%. Perineural invasion is not present. No extraprostatic tumor is seen.

    Specimen J US right apex

    2 of 3 cores contain carcinoma. The total length of tumor in all of the cores is 6 mm. The total length of tissue in all of the cores is 27 mm. The percentage of the tissue involved by tumor is 22%. The percentage of tumor greater than Gleason pattern 3 is approximately 5%. Perineural invasion is present.

    No extraprostatic tumor is seen.

    My PSA in the first part of last year was slightly above 4 so my MD wanted to retest 4mo later, which came back at over 6.  He felt I may have had prostatitis, so we tested again in October of last year and it was 4.16.  I have never had a positive digital rectal exam, but because they detected the tumor on the MRI the urologist has scored the cancer as cT2a.  When the initial biopsy came back the urologist felt I would probably be placed on active surveillance based upon the extent of the cancer in the core samples pending the results of the Decipher genomic test.  When he got the results back from the Decipher test he did a complete 180 degree change and recommended surgical removal or external beam radiation.  He said that my Decipher score, at .67, was very high and I had a significantly increased risk of aggressive prostate cancer.  My MRI shows no involvement in surrounding tissues, seminal vesicles, surrounding bone, bladder, lymph nodes, or rectum.  My PI-RADS v2 score is 3.

    I am scheduled to meet with a top-notch surgeon (He is supposed to be one of the best on the West Coast for robotic surgery) this coming week and a radiation oncologist in the coming weeks.  Both referrals work at the major cancer center near me, so I am sure I am in good hands.  I think it would still be a good idea to get another pathologist to look at my biopsy, so I think sending it to Epstein might be a good way to go.

     

    Ortho

    Payne,   

    Various professional medical protocols exist for when to reasonably engage in "Active Survellance."   I do not think that anything described as "aggressive PCa" qualifies, especially with your father's experience.  I had DaVinci myself, and five years later, I have normal sexual function and urinary control is BETTER than befoe surgery.   Full sexual recovery took me about two years however.    I would agree that your options are surgical removal or therapeudic radiation.  Definitely speak to BOTH a surgeon and rad oncologist, even if you feel as if you have already made a choice.  Speak with BOTH.  And include yor wife  in the discussions.  It sounds as if she perhaps fears surgery, but 'dying on the table' in prostate removal occures in fewer than one in 1,000 patients.  it is safer than driving to the doctor's office.

    I am wondering if your name means that you are an ortho surgeon ?   I have had 19 long bone fractures, which I guess is why I am wondering.

    max

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **
    All of us go through shock

    All of us go through shock and all those negative feelings when we are first diagnosed. This lasts for some months, so it is important to be in positive situations. Spend time with positive people, and, for example,  if you attend religious services (by zoom), you want the clergyman to be upbeat and positive.

     Let me emphasize that prostate cancer is very slow growing, so you do not have to rush into making a quick decision. You want to do things in a coordinated way to achieive the best results.

    You mentioned that you live on the West Coast. I live in So. CA and am very familiar with the best doctors and centers of excelence here, and am willing to share with you, if you wish.. There are other posters who may provide insights about various geographic areas....What ever treatment that you decide on, you want the very best, an artist to handle the various aspects of your case. You also want to strive to be treated in a high volume center of excellence.

    I am enrolled in an active surveillance protocol where I receive targeted biopsies using a Tesla 3 MRI and an Artemis three dimensional machine (a competitor of the UroNav machine that was used in your case). T. At any rate my doctor targets the suspecious lesions, then does a stratefied random sample of the rest of the prostate. Generally I receive about 15 sample cores.....

    My highest Gleason is a 3+4; I have a small amount of 4 so this is considered appropriate for active surveillance. Since a 3 dimensional biopsy showed this Gleason, I had a follow up biopsy a year afterward that trigulated the area to see how extensive this was. Nothing was found in the area.

    Your biopsy also indicates a small amount of 4, however it appears to me that there is a lot of Gleason 6. Now Gleason 6 will not leave the prostate, however when there is a lot of Gleason 6, it is very possible that there can be Gleason 4's hidden in the prostate. At any rate your doctor ordered a Decipher test, the results turned out to be a  decider. 

    FYI

    PIRAD ranks potential of significant cancer on a 1 to 5 scale, 1 being least likely and 5 most likely; 3 is neutral

    The T3 MRI, does not show microscopic tumors, but the results of the MRI indicate that no cancer was found.

    You may wish to visit with a medical oncologist for consultation that is unbiased....he/she may suggest that you have a pet scan to "really, really" make sure that there is no cancer outside the prostate. This might be overkill, but I would get an expert medical opinion. Axium petscan approved by medicare is a good one, however there is an investigational pet scan, PSMA that is the best....there is a $2700 charge for this one...UCLA does it.

    Surgery is a localized treatment, and is more likely to have side effects such as incontinence and erectile dysfunction that radiation., shortening of the penis

    There are various types of radiation; they all are comparable in outcome. The radiation oncologist can adjust the radiation to extend beyond the prostate; that is treat small cancers that may have escaped the prostate. 

    One that I favor is SBRT. Stereotactic body radiation therapy delivered by cyberknife, novalis and other machines. It's been around since 2003. It's a technological advance that has improved through image g uidance and development of shapeable radiotherapy beams. SBRT has the ability to to deliver higher dose of radiation in 4 or 5 sessions, over two weeks, and provides similar results to IMRT that takes 8 weeks. The amount of total Gy depending on the doc ranges from about 35 to 40 gys, much less than IMRT. While you are treated you can go about your regular activities.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5679773/

    Also good idea to have a colonoscopy before radiation.

     

     

     

     

     

     

     

     

     

     

     

     

     

  • PayneOrtho61
    PayneOrtho61 Member Posts: 15
    edited July 2020 #10
    New CA Diagnosis

    Wow, great information!  I am in the San Francisco Bay area and am being seen at the UCSF Cancer Center.  I feel as though I am getting some of the top urologists, and the surgeon that I have a consultation with this Wednesday has been described as world class,  I also had a long talk today with my long time friend and general practicioner who is no longer seeing patients but has well over 30 years of experience seeing men go through the whole prostate cancer roller coaster.  He talked me off the edge and basically said what you just did about having time to figure things out because prostate cancer is not fast growing.  I also have so much going on in my life, I don't really know how to fit everything in.  My mother is in the last stages of metastatic gall bladder cancer and I am one of four siblings but the only one that lives close.  I work in my practice 4 and half days a week and teach in San Francisco the other half day.  I was hoping to put off any difinitive treatment for at least a year becuase my daughter will be out her residency to join me in practice, which should allow me to have a more flexible schedule.  However, my urologist made it seem that I need to take action in the next six months.  I am fearful of making the wrong decision and putting it off like my father did.  I went through his battle with end stage prostate cancer, and I would not wish what he went through on any one-it was an agonizing death...

  • VascodaGama
    VascodaGama Member Posts: 3,429 **
    edited July 2020 #11
    Fearful of making the wrong decision

    Payne,

    You got fantastic responses above. I also think that you shouldn’t rush but try using this period for researching, consulting and educate on the details of the diagnosis, treatment options, risks involved and the side effects. Any thing you chose will affect your quality of life. You will have to decide wisely and then accept your newer you.

    Prostate cancer got many faces and each case is different but similar, even if heredity is in play. I think that you shouldn’t compare your case with that of your father. However, you should consider the results of the Decipher genomic test which you describe in your first post, that it rates the cancer aggressive. This genomic test is typically used for predicting adverse pathology (AP) at radical prostatectomy. In other words, it predicts a worst case scenario once we got the gland specimen (and other parts) under the microscope.

    I have noticed that you commented in having a clinical stage cT2a but the biopsy report signals positive cores at both lobes. That would classify your case as cT2c instead. Probably it may be advisable in getting a second opinion on all the biopsy cores. You also indicate the finding of Perineural Invasion present which gives the probability for existing extraprostatic extensions. Invasion in seminal vesicles and the nerve bundle is usually taken into consideration as an escape route of the cancer. The term “No extraprostatic tumor is seen” is ambiguous as it covers a very low percentage (0.03%) of the capsule. You need assurances that your case is contained otherwise surgery alone would not be the best option.
    I recall my diagnosis when the urologist suggested in our first visit as T1 (based on PSA, DRE and image studies) then it move to T2c (adding the biopsy results) and after surgery it become pT3a pN0 MX.

    Second opinions are good even if they create confusion. It is common to find the urologists recommending surgery as much as radiotherapists recommending radiation. A medical oncologist specialized on PCa may be helpful in formulating a final decision. You have time and use it wisely.

    Best wishes and luck in this journey.

    VGama

  • Clevelandguy
    Clevelandguy Member Posts: 711
    Decisions?

    Hi,

    Good advice from the people above.  I too was a 3+4 with Perinueral invasion.  I chose the robotic surgery route and don't have any regrets.  After five years I am cancer free and just drip every once in awhile so I wear a pad every day.  Sexual function is in the 80-90% range and both the leakage and ED issues took about two years to resolve.  Just to let you know there are no guarantees with surgery or radiation as far as lasting side effects. Cyberknife as mentioned above is a good selection I feel if you go the radiation route.  There are people that post here that have had very good and very bad results with either treatment protocol.  Great doctors and great facilities I think play a large role in your recovery and goal of being cancer free down the pike.  
    At 3+4 with Perineural I would not ignore it or wait many months to decide, sounds like your cancer is getting ready to leave the barn, I'm glade I didn't wait or I would probably still have cancer today(left the barn).  It is a personal decision for you and your family once you have all the facts via consults, ect.  Second opinions are a good thing, good luck and keep in touch as we can share our experiences with you both before and after your treatment.

    Dave 3+4

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **
    edited July 2020 #13
    .

    ucsf is a center of excellence. As a patient, I am happy to be enrolled in a sister hospital...ucla.

    I attended lectures by mack roach who is radiation oncologist at ucsf. I found his knowledge to be impressive. He specializes in IMRT and Brachy therapy, not SBRT. He is a source that you might want to consider.

    As robotic surgery has been in existance for a while now, there are various docs who are excellent. Up until about 6 years ago, I spent a lot of time exploring the reputations of the surgical leaders in this specialty. The one that stood out to me was a Dr. Tewari in NYC. He did lots and lots, and developed a procedure, that would diminish erectile disfunction. I don't know about the surgeons in san francisco area, but in LA there is a dr Reiter at ucla who I think is a genius. I spoke with him a couple of years ago. He told me that he uses mri guidance to reduce his surgical margins...I think that his was 05 By comparison top surgeons ranged from .12 to .18 Also at usc, there is this guy Dr Gill who was brought from  the cleaveland clinic to develop a first rate department,  who is a top surgeon..at any rate the dos he brought here are first rate as well. The team is among the best......I am giving you this info so you can do your due dilligence, but to be honest, I'm not a fan of prostate surgery.

    .....................................

    General

    Not only are men in your family more likely to be diagnosed wih prostate cancer, but there is a correlation between prostate and breast cancer, so the women(your daughter and others) in your family need to get those mamograms.

    Diet 

    There have been studies among prostate cancer patients who have had prostectomies, that indicate more aggressive recurrance among those who eat red meat and high fat dairy.....basically heart healthy is prostate cancer healthy, so you and all your family members need to eat in a heart healty way.....

    Heart disease.....is epidemic....so all of us are more likely to die of heart disease than prostate cancer......so we need to follow a heart healty life style.

     

     

  • ASAdvocate
    ASAdvocate Member Posts: 164
    If I had your pathology, I

    If I had your pathology, I would move to treatment. That said, you can take some time now to research and be comfortable with what is the best treatment for you.

    For an intermediate grade patient, just about all of ten or more treatment types could be curative. I tend to notice non-recurrence rates, and rank the possible treatments with that as the primary criterion. Based on that standard, I have yet to read any study that showed that surgery could match the non-recurrence results of the two advanced types of radiation, SBRT/Cyberknike and proton beam therapy. Not even close. Make sure that you check out those two options.

  • Clevelandguy
    Clevelandguy Member Posts: 711
    Choose wisely

    Hi All,

     As I have stated before choose wisely on the treament that is the best for your set of circumstance whether it be surgery or radiation. With Surgery you will know within a few months if your cancer is gone(several zero psa tests) and radiation has a longer cancer die off time due to the slow kill of radiation(many months). The effectivity of Surgery vs Radiation on the long term "kill" rate will always be debated as many people who post here have had both treatments protocols report excellence results.  Its funny that the people who have not had either seem to be the experts on which is better.  Kinda like a person who has never played football telling you how to run your High School football program.  Choose wisely and study all the the side effects for both treatments before you choose, they are not reversible at a later date.

    Dave 3+4

  • ASAdvocate
    ASAdvocate Member Posts: 164
    edited July 2020 #16

    Choose wisely

    Hi All,

     As I have stated before choose wisely on the treament that is the best for your set of circumstance whether it be surgery or radiation. With Surgery you will know within a few months if your cancer is gone(several zero psa tests) and radiation has a longer cancer die off time due to the slow kill of radiation(many months). The effectivity of Surgery vs Radiation on the long term "kill" rate will always be debated as many people who post here have had both treatments protocols report excellence results.  Its funny that the people who have not had either seem to be the experts on which is better.  Kinda like a person who has never played football telling you how to run your High School football program.  Choose wisely and study all the the side effects for both treatments before you choose, they are not reversible at a later date.

    Dave 3+4

    Clevelandguy.

    From what you just wrote, it appears that your opinion is based on anecdotal observation. Mine are based on peer-reviewed studies. Neither of us have had SBRT or protons, so there will always be areas where personal experience is not present.  Such gaps can make discovery, debate, and learning possible. On the other hand, snark does not enhance the discussion.

  • Clevelandguy
    Clevelandguy Member Posts: 711
    edited July 2020 #17
    Always get an experienced plumber

    Hi Asa,

    When I'm getting some plumbing work done I will always choose the experienced plumber not the one who has just "studied" on the subject.  Studies are fine reading but I would rather get help from someone who has gone down that road firsthand to see how it really was.  Radiation or Surgery are good tools and if I was coming to this board for advice and I did five years ago, I would much rather hear from first hand accounts rather than someone who has studied peer reviews.  Not right for you to bad mouth surgery or radiation based on your opinion.  Nothing snarky about my comments just real experiences based on my personal journey.  Hopefully some of the radiation folks will chime in to give Payne some real life info on how they went through radiation.  None of us are doctors but real life survivors or either radiation, surgery, or asa treatments and if I was looking for advice I would want to hear from people who have walked the talk as they say.

    Dave 3+4

  • ASAdvocate
    ASAdvocate Member Posts: 164
    edited July 2020 #18
    Well, CG,

    We don't want to distract from the helpful intent of the forum. But, I did not "bad mouth" surgery, just pointed out that studies showed two alternatives to have significantly better non-recurrence rates. That was not an attack on what you chose. The information and treatments today are not what they were at that time. But, anyway, stay safe.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **
    edited July 2020 #19
    .

    The key to prostate cancer by mark sholz md(world renown medical oncologist who only specializes in prostate cancer presents 30 experts who explain 15 stages of prostate cancer

    Here are some comments made in the book about the side effects of surgery for your information. Of course you need to read book so that you will make your own deicsion, to determine  if these comments are appropriate.

    "only about 15 percent of men will have the same erectilefuncion two years after surgery as sthey had prior to surgery" Kelly Chiles md and john mulhall md in the chapter about sexual dysfunction...these docs specialize in sexual dysfunction

    With reference to incontenence

    "high bladder pressure with muscular spasmss of the the bladder that develop as the bladder fills occurs in 50 percent of men. It is possible athat these bladder spasms are related to nerve damage from protatectomy."

    Damage to the sphincter muscle occurs in 35 percent of men after surgery"

    "A combination of bladder spasms and sphincter damaage occurs 10 percent of the time"

    Gary Leach,MD (chapter on surgical side effects affecting urination) He specializes in the diaagnosis and treatment of incontinence--the above quotes talks about his patients.

    "In contrast to surgery, IMRT is noninvasive, with no need to make a single cutor remove an entire organ from the body. Because of this IMRT has a much lower risk of bleeding, pain and infection that surgical approaches. Furthermore, given that the urethra runs through the prostate, surgical removal of the prostate requires removal of part of the urethra, then stitching the cut ends back together, leaading to risk of urinary leakage that may requrie wearing  pads throughout the day. Surgery can also lead to to shorti=ening of the penis. By contrast, IMRT has a much lower risk of urinary leakage and essentially no risk of penis shortening"

    Zacgary Zumsteg md and howard sandler md, both radiation oncologists, one at cedars sinai

     

    The above are various non scientific based comments , not random study based, that simply show that major side effects are prevelant with surgery. Generally there are sub industries that developed to treat men that experienced side effects from surgery. This is written so you will think two, three or four times before you decide on having a prostectomy.

    At this site there are a few men, like cleveguy above, who have have surgery, and think that it's better than apple pie, so I am sure will provide you with comments

     

     

     

  • Clevelandguy
    Clevelandguy Member Posts: 711
    Data plus real world experiences

    Hi Hopeful,

    You and ASA can spout all the studies you want and they are fine backup reading when you are trying to make a decision.  But its not the only thing I considered when I decided on my treatment plan.  I also wanted to hear first hand from men who have either had surgery or radiation.  As any learned person knows there is text book learning and real world knowledge and both are very valuable. I would think Steve 1961 would differ with your accounts on the bebefits of radiation as MK 1961 had a lot of problems after his prostate surgery. I did choose surgery but is it right for everyone, no, based on your unique set of circumstances.  So what's  the point?  The point is use the data plus first hand accounts to help guide you to your decision.  Its not fair to condem one treatment over the other and a lot of people on this forum have had great success with either radiation or surgery so lets give both a fair shake. Let the new cancer patient decide on facts which include data plus first hand knowledge and not someones personal bias when they have not walked the talk. It hard enough to make a decision when faced with the big C.  And by the way Hopeful, Apple pie can be mighty tasty with a side of vanilla ice cream.

    Dave 3+4

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **
    edited July 2020 #21
    .

    You made some good points...thank you for the input

    Best

  • ASAdvocate
    ASAdvocate Member Posts: 164
    Dave, Keep in Mind

    AS is not a lifetime guarantee, so I have been researching treatments for myself for 15 years. That involves many in-person suppport meetings, a dozen or so websites like this one, five Facebook PCa support groups, and now various Zoom gatherings. So, I have heard from thousands of men who have had a spectrum of treatments. I've probably posted 8,000 comments on various forums. You need to understand that my strong opinions did not come from reading studies, they came from all the first-hand accounts I was told by men who walked those walks. The boomarking of hundreds of studies came later, to reinforce that there was easily cited facts to support my views.

  • Clevelandguy
    Clevelandguy Member Posts: 711
    edited July 2020 #23
    Well ASA I guess we can agree

    Well ASA I guess we can agree to disagree on how bad surgery is.  

    Dave 3+4

  • Josephg
    Josephg Member Posts: 309 **
    edited July 2020 #24
    Are We Finished?

    In fairness and respect to folks coming here to this Forum looking for comfort and reassurance, as well as reviewing personal experiences of fellow PCa patients, are we finished with our spat??  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,688
    edited July 2020 #25

    Dave, Keep in Mind

    AS is not a lifetime guarantee, so I have been researching treatments for myself for 15 years. That involves many in-person suppport meetings, a dozen or so websites like this one, five Facebook PCa support groups, and now various Zoom gatherings. So, I have heard from thousands of men who have had a spectrum of treatments. I've probably posted 8,000 comments on various forums. You need to understand that my strong opinions did not come from reading studies, they came from all the first-hand accounts I was told by men who walked those walks. The boomarking of hundreds of studies came later, to reinforce that there was easily cited facts to support my views.

    Overall

    AS, your demeanor and approach to the PCa issue is what is termed in classical logic (Aristotelain logic) "the appeal to authority."

    Cleaveland's posts, as always for him, were never snarky or rude -- observations I wish were attributable to you as well.

    I admire the value you bring to the discussion, in knowing so well Best Practices protocols for AS generally.  But millions, I suspect even tens of millions, of men have been treated and or cured of this disease with both surgery and various modes of radiation worldwide.   No one has ever been 'cured' via AS.   Stop gnawing on the hand that feeds....   And I agree with Joseph that this tit-for-tat is inappropriate and hopefully has run its course.  But no one appointed me Hall Monitor.

    There have been occassional doctrinaire writers here over time: men for whom radiation is good, surgery evil, or all other possible responses to a diagnosis.  This is childish and can never claim overwhelming empirical support, given the millions sucessfully treated in the many ways available.   Your level of obsession, as indicated by the number of groups you are involved with, suggests to educated laypeople that you may have issues that are not wholly PCa in etiology.  There is interest, there is due diligence, there is persistence, and then there are responses way beyond all of these.

    My thoughts here may seem to you judgemental, but they are in fact the opposite: an insistence that all mainstream medical responses are potentially good, when supervised by a doctor.   I have never denigrated AS, radiation, proton, or sugery.  I have posted often praises of AS in fact, given that I have a close friend for whom it has worked wonderfully.  It is you who tend toward judgementalism and narrowness.

  • MK1965
    MK1965 Member Posts: 220

    Data plus real world experiences

    Hi Hopeful,

    You and ASA can spout all the studies you want and they are fine backup reading when you are trying to make a decision.  But its not the only thing I considered when I decided on my treatment plan.  I also wanted to hear first hand from men who have either had surgery or radiation.  As any learned person knows there is text book learning and real world knowledge and both are very valuable. I would think Steve 1961 would differ with your accounts on the bebefits of radiation as MK 1961 had a lot of problems after his prostate surgery. I did choose surgery but is it right for everyone, no, based on your unique set of circumstances.  So what's  the point?  The point is use the data plus first hand accounts to help guide you to your decision.  Its not fair to condem one treatment over the other and a lot of people on this forum have had great success with either radiation or surgery so lets give both a fair shake. Let the new cancer patient decide on facts which include data plus first hand knowledge and not someones personal bias when they have not walked the talk. It hard enough to make a decision when faced with the big C.  And by the way Hopeful, Apple pie can be mighty tasty with a side of vanilla ice cream.

    Dave 3+4

    While reading thru this tread

    While reading thru this tread, I see I was mentioned as bad surgical outcome.

    And this is throught. I had very bad surgical outcome.

    Was dx with prostate cancer at age of 51. I was very healthy in excellent physical shape, not on any medicatio, was very active, excercised 4-5 times a day, and on weekends, officiated lots of soccer games for last 12 years. Just to mention; I am non smoker, non drinker and not overweight.

    Had RARP on 11/02/2016. I reached continence in about 5 months but still I have stress incontinece on any physical strenous movents and also with snizing, while coughing and leaking during sex.

    After RP I tried everything possible to recover my erectile function with no success at all. I used Cialis, Viagra, VED, TRIMIX, BIMIX and nothing worked excpet partial erections 60-70% with TRIMIX but TRIMIX was so extremely painful that I could not stay engaged in intercurse longer then just a  few minuets with pains and aches in my penis for 24 hours post injecting.

    Almost 4 years after and I still regret having RP. RP ruined my life for the rest of my life.

    The only success so far is that my PSA is <0.006.

    MK

  • PayneOrtho61
    PayneOrtho61 Member Posts: 15
    edited July 2020 #27
    Met with Surgeon

    I met with the surgeon yesterday and he was very helpful.  He did not try to convince me one way or another.  He felt very confident that the risk of incontinence with RP is very low 2-3% for his patients.  He guaranteed that I will have a greater challenge with impotence.  I was concerned that because my prostate is on the larger side (90cc), it may me more problematic for removal and possible increased risk of incontenence.  He felt treatment with Finasteride 3-4 months prior would shrink the prostate so that surgery would not have any significant increased risks of side effects.  He encouraged me to consult with the radiology oncologist regarding the different options for external beam radiation which I am considering and will have that consult in August.  My wife was present at the surgical consult and still hears what she want, which is that I can wait for a year before deciding on treatment.  The surgeon actually said that where I am on the scale of the disease is intermediate prostate cancer and that delaying treatment 6 months will not have and adverse effect on the outcome of the treatment be it radiation or surgery.  Based on the input from all of you above, I should take the time to research all the options and come to a decision in the next 3-4 months. I have also spoken to my two adult children, who are both in the healthcare field, and they understand and sympathize with my situation.  Hopefully, my wife will come to terms with the fact that I need treat my cancer with a definitve treatment and not watch it through active surveilence and just hope and pray is doesn't metastasize . I really appreciate the support and information from this group and will use it as I take this journey fighting PCa.  Thank you!

  • Clevelandguy
    Clevelandguy Member Posts: 711
    Down the path....

    Hi,

    Sounds like you are going down the right path by analyzing your options along with your team, wife, doctors, back up data, ect.. When the time comes you should feel comfortable with your choice because you did your homework. Good luck in the future on fighting the beast.  When you pick your treatment plan there are lots of good people here to give you their feedback on your choice If you would like the advice.

     

    Dave 3+4

  • lighterwood67
    lighterwood67 Member Posts: 305 **

    Met with Surgeon

    I met with the surgeon yesterday and he was very helpful.  He did not try to convince me one way or another.  He felt very confident that the risk of incontinence with RP is very low 2-3% for his patients.  He guaranteed that I will have a greater challenge with impotence.  I was concerned that because my prostate is on the larger side (90cc), it may me more problematic for removal and possible increased risk of incontenence.  He felt treatment with Finasteride 3-4 months prior would shrink the prostate so that surgery would not have any significant increased risks of side effects.  He encouraged me to consult with the radiology oncologist regarding the different options for external beam radiation which I am considering and will have that consult in August.  My wife was present at the surgical consult and still hears what she want, which is that I can wait for a year before deciding on treatment.  The surgeon actually said that where I am on the scale of the disease is intermediate prostate cancer and that delaying treatment 6 months will not have and adverse effect on the outcome of the treatment be it radiation or surgery.  Based on the input from all of you above, I should take the time to research all the options and come to a decision in the next 3-4 months. I have also spoken to my two adult children, who are both in the healthcare field, and they understand and sympathize with my situation.  Hopefully, my wife will come to terms with the fact that I need treat my cancer with a definitve treatment and not watch it through active surveilence and just hope and pray is doesn't metastasize . I really appreciate the support and information from this group and will use it as I take this journey fighting PCa.  Thank you!

    Doing your homework

    Sounds like you are doing your homework.  That is exactly what you should be doing.  Remember the decision is yours based on the information provided.  There are a lot of questions to ask as you can see from the comments you are receiving.  From my experience, and I am around 10 years older than you, be sure and keep quality of life points of interest in front of you.  Start preparing by getting in the best shape you can prior to the radiation or surgery treatment.  There is a physical side and sometimes a more important point, a mental side.  Stay positive.  You can beat this with either treatment, radiation or surgery.  Your case is unique to you.  You are driving this train.  If someone told me that they could cure me with radiation or surgery with no side effects, I am certain I would choose radiation.  There are a lot of good folks on this site that will feed you with a fire hydrant.  Just take your time and absorb it.  Your main focus should be what treatment is going to deal this cancer a knock out blow, with minimum side effects, and minimum impact on your quality of life.  Good luck on your journey.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 **
    edited July 2020 #30
    .

    Here are notes that I took from a presentation by mark Schulz, world renowned medical oncologist who only specializes in Prostate cancer. The presentation can be found on YouTube.

    radical prostatectomy for basic teal Prostate cancer-Prostate cancer staging guide

    the presentation is about eight minutes 

     

    Surgery for intermediate 

     

    Technology in radiation has advanced, while surgery long considered the gold standard has stayed about the same.

     

    Surgery is an operation and Anesthesia is given. There are studies that indicate long term memory loss with Anesthesia 

     

    Radiation provides greater preservation of urinary and sexual function. Surgery scores poorer. 

     

    After surgery everyone is impotent, and a minority show improvement. A minority of men of 5 to 10 percent claim that their erections are the same as before surgery.

     

    Leaking urine is fairly non existent with radiation. But the majority of men who have surgery become incontinent right after surgery(the majority recover with fairly good control, however between 5 and 15 percent depending on age do not)

     

    Stress incontinence (laughing, jumping) can occur resulting from surgery....

     

    About 20% of men ejaculate with urine

     

    Advantages with surgery 

    Patient who has a very large prostate and pre-existing urinary blockage from a large prostate. When you give radiation to a large prostate these conditions can intensify.

    More accurate staging

     

    Summary 

    More side effects

    Cure rates no better 

    Need to have a major operation 

     

     

     

     

     

     

  • ASAdvocate
    ASAdvocate Member Posts: 164
    edited August 2020 #31

    Overall

    AS, your demeanor and approach to the PCa issue is what is termed in classical logic (Aristotelain logic) "the appeal to authority."

    Cleaveland's posts, as always for him, were never snarky or rude -- observations I wish were attributable to you as well.

    I admire the value you bring to the discussion, in knowing so well Best Practices protocols for AS generally.  But millions, I suspect even tens of millions, of men have been treated and or cured of this disease with both surgery and various modes of radiation worldwide.   No one has ever been 'cured' via AS.   Stop gnawing on the hand that feeds....   And I agree with Joseph that this tit-for-tat is inappropriate and hopefully has run its course.  But no one appointed me Hall Monitor.

    There have been occassional doctrinaire writers here over time: men for whom radiation is good, surgery evil, or all other possible responses to a diagnosis.  This is childish and can never claim overwhelming empirical support, given the millions sucessfully treated in the many ways available.   Your level of obsession, as indicated by the number of groups you are involved with, suggests to educated laypeople that you may have issues that are not wholly PCa in etiology.  There is interest, there is due diligence, there is persistence, and then there are responses way beyond all of these.

    My thoughts here may seem to you judgemental, but they are in fact the opposite: an insistence that all mainstream medical responses are potentially good, when supervised by a doctor.   I have never denigrated AS, radiation, proton, or sugery.  I have posted often praises of AS in fact, given that I have a close friend for whom it has worked wonderfully.  It is you who tend toward judgementalism and narrowness.

    Max, Max. Max....

    Thank you for your attempt at psychoanalyis. If you saw my facebook page, you would realize that I have many hundreds of friends and ongoing activities, such as traveling all over the world. PCa is not an "obsession" for me, but I do have free time on most days to check various news, politics, and PCa support sites. I do have strong opinions, as is expected  for someone who takes "advocate" for their screen name. The synomym for advocate is partisan. 

    As far as denigrating treatments, I always can suppport my statements with peer-reviewed studies. But, the opinions were formed by statements of hundreds of men who told me they were unhappy with surgery. I know, the ones who are unhappy are the ones who hang around and gripe, like restaurant reviews. But, I heard what I heard.

    At some future point, there will probably be some effective treatment that will not have potentially devasting side effects. Until then, whenever I hear somebody tell a newly diagnosed man to just "get it out", I shall contunue to voice my opinion that surgery is no longer the "gold standard" and that other options should be explored.