Question for prostate surgery recipients

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Comments

  • TCB
    TCB Member Posts: 1
    great read/info for this newby but why so outdated?

    great read/info for this newby but why so outdated?

  • jeffman
    jeffman Member Posts: 46 Member
    No erection does not equal no

    No erection does not equal no sex life. There are a boatload of alternative methods. As a boomer who came of age in the 70's I can attest to that. Even when I could get an erection I didn't always need it. After my surgery I lost the erection but orgasms were the same , but without ejaculation. Sometimes you need to adapt as opposed to give up. I'm 66 , so far cancer free after 2 years and still have a good, but different, sex life.

  • MK1965
    MK1965 Member Posts: 233 Member
    jeffman said:

    No erection does not equal no

    No erection does not equal no sex life. There are a boatload of alternative methods. As a boomer who came of age in the 70's I can attest to that. Even when I could get an erection I didn't always need it. After my surgery I lost the erection but orgasms were the same , but without ejaculation. Sometimes you need to adapt as opposed to give up. I'm 66 , so far cancer free after 2 years and still have a good, but different, sex life.

    jefman,

    jefman,

    Iwould Be thrilled to know what you are calling sex Life without sex?

    My sex life after RP is totally nonexistent.

    MK

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    10 Years Later

    Looks like we are answering a question from over 10 years ago.  Oh well, in my case, I was gutted (RARP) 3/18.  I would say the orgasms are about the same.  The erection issue is holding at around 75%.  PSA is undetecable at this time.  Logically, I think nothing is really the same.  How can it be?  The surgery removed the majority, if not all, of the critical pieces that control a normal erection and orgasm.  Just my cut on the question.

  • jeffman
    jeffman Member Posts: 46 Member
    MK1965 said:

    jefman,

    jefman,

    Iwould Be thrilled to know what you are calling sex Life without sex?

    My sex life after RP is totally nonexistent.

    MK

    To answer your question

    To answer your question MK1965:

     

    In my experience/opinion "sex life" is not solely defined/limited to penetration by an erect penis. When there's a will,there's a way. In this case more than one way.

     

     

    Thanks,

    Jeff

  • MK1965
    MK1965 Member Posts: 233 Member
    jeffman said:

    To answer your question

    To answer your question MK1965:

     

    In my experience/opinion "sex life" is not solely defined/limited to penetration by an erect penis. When there's a will,there's a way. In this case more than one way.

     

     

    Thanks,

    Jeff

    Holding hands

    Holding hands and looking at each other I will never call sex life.

    Maybe, I am wrong.

    MK

  • Clevelandguy
    Clevelandguy Member Posts: 1,208 Member
    Your right Jeffman

    Hi,

    Having sex with your partner is not limited in my opinion to just penetrating.  Having sex can be just about anything else(use your imagination).  I don’t think we are talking about holding hands if you know what I mean, hint hint, wink wink without getting to graphic.

    You sometimes have to use your imagination when your a wounded warrior like most of us are and be on the creative side.

    Dave 3+4

  • mhl
    mhl Member Posts: 9
    edited August 2019 #29
    prostrate surgery or proton

    We went to see the surgeon who does robotic surgery and he could not promise that it would be nerve sparing. While there we were offered a trial with 3 arms one had this drug  Apalutamide,second arm had this combination apalutamide plus abirateroneacetate and GnRH agonist  and 3rd arm was surgery . We were told my husband was randomized to surgery. My question is does any one know anything about these drugs are they availble on the market? I am  also  trying to find out information about proton therapy for the cancer. Does anyone know anything about proton therapy?  Can you have proton treament and still have surgery. Any informaiton would be greatly appreciated. My husband has PSA 73 without symptoms no metastasis biopsy showed 90% cancer in all nine slides and the doctor on exam was not able to feel anything so you can see my confusion

    Thank you

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    mhl said:

    prostrate surgery or proton

    We went to see the surgeon who does robotic surgery and he could not promise that it would be nerve sparing. While there we were offered a trial with 3 arms one had this drug  Apalutamide,second arm had this combination apalutamide plus abirateroneacetate and GnRH agonist  and 3rd arm was surgery . We were told my husband was randomized to surgery. My question is does any one know anything about these drugs are they availble on the market? I am  also  trying to find out information about proton therapy for the cancer. Does anyone know anything about proton therapy?  Can you have proton treament and still have surgery. Any informaiton would be greatly appreciated. My husband has PSA 73 without symptoms no metastasis biopsy showed 90% cancer in all nine slides and the doctor on exam was not able to feel anything so you can see my confusion

    Thank you

    A few relevant thoughts regarding your post

    mhl,

    Good luck making good choices in your husband's treatment.   Surgeons will spare the erectile nerves almost always, except when there is suspicion of cancer involved with them.  Hence, they cannot promise in advance to not remove them.   In usch cases, the nerves must be cut out, as any patient would want.  Also, if a person has cancer in his erectile nerves outside the gland, then if he chooses radiation instead of surgery, that must be radiated to kill all of the disease; otherwise, the cancer is simply going to spread.  Radiating them is going to destroy those nerves as much as surgically cutting them out would. In other words, if the erectile nerves are cancerous, any successful treatment is going to almost certainly render him equally impotent thereafter.

    Proton is mostly regarded as a valid option.  Some insurance carriers will not pay for it, and many cancer centers do not offer it, but more and more are beginning to do so. Proton advocates used to make outlandish claims about its success and lack of side effects, but recent stuides from the past several years are pushing back against much of that.  These studies mostly, generally, confirm the effectiveness of PT, but deny its superiority to convetional radiation techniques.

    Digital Rectal Exams are of very limited use, since they only sense the lower rear half of the gland; they tell the doctor nothng about the other half.

    Your husband's PSA and volumetric level of involvement highly suggests that he has involvment OUTSIDE the gland.  This is NOT definite, but highly probable.  Negative PET scans, MRIs, or bone marrow scans do NOT prove lack of escape.  But they do constitue commentary on the extent of escape; that is, they indicate that any escaped tumors are currently too small to be seen on imaging.  I hope some of this clarifies to you what the doctors are telling you.  

    max

  • Clevelandguy
    Clevelandguy Member Posts: 1,208 Member
    MRI?

    Hi MHL,

    Have they done a biopsy yet to determine the severity of his cancer?  The biopsy will tell you how agressive the cancer is, might weigh in on your decision. If I was to do radiation I would look very closley at Proton.  The one thing I like about Proton is that it stops at the tumor and does not go past it. Other forms of radiation go completely through the body and could hit the bowel or rectum maybe causing latent damge.

    Dave 3+4

  • mhl
    mhl Member Posts: 9
    edited August 2019 #32

    A few relevant thoughts regarding your post

    mhl,

    Good luck making good choices in your husband's treatment.   Surgeons will spare the erectile nerves almost always, except when there is suspicion of cancer involved with them.  Hence, they cannot promise in advance to not remove them.   In usch cases, the nerves must be cut out, as any patient would want.  Also, if a person has cancer in his erectile nerves outside the gland, then if he chooses radiation instead of surgery, that must be radiated to kill all of the disease; otherwise, the cancer is simply going to spread.  Radiating them is going to destroy those nerves as much as surgically cutting them out would. In other words, if the erectile nerves are cancerous, any successful treatment is going to almost certainly render him equally impotent thereafter.

    Proton is mostly regarded as a valid option.  Some insurance carriers will not pay for it, and many cancer centers do not offer it, but more and more are beginning to do so. Proton advocates used to make outlandish claims about its success and lack of side effects, but recent stuides from the past several years are pushing back against much of that.  These studies mostly, generally, confirm the effectiveness of PT, but deny its superiority to convetional radiation techniques.

    Digital Rectal Exams are of very limited use, since they only sense the lower rear half of the gland; they tell the doctor nothng about the other half.

    Your husband's PSA and volumetric level of involvement highly suggests that he has involvment OUTSIDE the gland.  This is NOT definite, but highly probable.  Negative PET scans, MRIs, or bone marrow scans do NOT prove lack of escape.  But they do constitue commentary on the extent of escape; that is, they indicate that any escaped tumors are currently too small to be seen on imaging.  I hope some of this clarifies to you what the doctors are telling you.  

    max

    prostrate surgery or proton

    Thamk you so much for you response. My husband final dx prostatic adenomacarcinoma 80% of tissue and 4+3=7 gleasonStage 1 MRI and bone scan showed no metastsis with recomendation of surgery. Do you know if he tries proton radiation first can he still be a candidate for surgery. We are tryin to look at all options since there seems to be no mention of medications as part of the treatment plan.

    Thank you

  • mhl
    mhl Member Posts: 9

    MRI?

    Hi MHL,

    Have they done a biopsy yet to determine the severity of his cancer?  The biopsy will tell you how agressive the cancer is, might weigh in on your decision. If I was to do radiation I would look very closley at Proton.  The one thing I like about Proton is that it stops at the tumor and does not go past it. Other forms of radiation go completely through the body and could hit the bowel or rectum maybe causing latent damge.

    Dave 3+4

    prostrate surgery or proton

     Thank you for your response. He had a biopsy with 80% o-90% tissue adenocaand gleason 4-3=7  MRI and body scan negative for metatsis  surgery unable to garuntee that it will be nerve sparing is the only option discussed by medical people so I really want to explore options such as proton treatment /medications /surgery

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited August 2019 #34
    mhl said:

    prostrate surgery or proton

    Thamk you so much for you response. My husband final dx prostatic adenomacarcinoma 80% of tissue and 4+3=7 gleasonStage 1 MRI and bone scan showed no metastsis with recomendation of surgery. Do you know if he tries proton radiation first can he still be a candidate for surgery. We are tryin to look at all options since there seems to be no mention of medications as part of the treatment plan.

    Thank you

    Slug fest

    mhl,

    You asked a question that has traditionally engendered a fair amount of disagreement here. The conventional wisdom is that after radiation therapy, prostatectomy is not possible.  Some guys then insist that it is.  However, almost no surgeons will remove a prostate post-radiation application.  My own surgeon, who had done well over 1,000 RPs today, advertises as a surgeon who WILL do the complex surgery after radiation, but only a handful of surgeons have this rare sub-specialization.  After radiation, the gland become fiberous and very difficult to cut.  Hence, in real life for most patients, removal following radiation is not possible, and would likely be of little benefit anyway.

    Radiation to the tissue that formerly surrounded the gland after it was removed IS possible, and it fact is pretty common, especially in cases of relapse.

    You mention "recommendation for surgery." Recommended by whom ?  Probably by a urologist.   I suggest you consult with a radiation oncologist also, since his or her assessment may be quite a bit different.

  • mhl
    mhl Member Posts: 9

    Slug fest

    mhl,

    You asked a question that has traditionally engendered a fair amount of disagreement here. The conventional wisdom is that after radiation therapy, prostatectomy is not possible.  Some guys then insist that it is.  However, almost no surgeons will remove a prostate post-radiation application.  My own surgeon, who had done well over 1,000 RPs today, advertises as a surgeon who WILL do the complex surgery after radiation, but only a handful of surgeons have this rare sub-specialization.  After radiation, the gland become fiberous and very difficult to cut.  Hence, in real life for most patients, removal following radiation is not possible, and would likely be of little benefit anyway.

    Radiation to the tissue that formerly surrounded the gland after it was removed IS possible, and it fact is pretty common, especially in cases of relapse.

    You mention "recommendation for surgery." Recommended by whom ?  Probably by a urologist.   I suggest you consult with a radiation oncologist also, since his or her assessment may be quite a bit different.

    prostrate surgery or proton

    Radical prostectomy was the recommendation by urologist and the surgeon who does robotic surgery. I have not spoken with a radiation oncologist yet because initially in our relief that there was no metastsis we though surgery was our only option. As I keep reading I see that there may be other advertised options  and  I am trying to  get more information on types of radiation  tx. 

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    Decisions

    Well, it comes down to gut (surgery) or nuke (radiation).  If the cancer has escaped the gland, most folks are advised to nuke.  If the cancer is contained to the gland, most folks are advised to gut.  In my case, I was advised to gut (gland removed; seminal vesicles removed; 8 pelvic lymph nodes removed; bladder neck reconstruction).  If your quality of life is dependent on preventing erectile dysfunction, I would probably go with the nuke.  However, in my opinion, nuke or gutting can cause erectile dysfuntion.  If your quality of life is dependent on defeating the cancer and adjusting to the side effects, then like most of us you have a tough decision to make.  Like I said, if the cancer has escaped the gland no need for surgery, just radiation.  I had my RARP 3/20/2018.  At this time, my PSA is undetecatble;  I am fully continent;  still having issues with ED.  Good luck on your journey.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    mhl said:

    prostrate surgery or proton

    Radical prostectomy was the recommendation by urologist and the surgeon who does robotic surgery. I have not spoken with a radiation oncologist yet because initially in our relief that there was no metastsis we though surgery was our only option. As I keep reading I see that there may be other advertised options  and  I am trying to  get more information on types of radiation  tx. 

    More info

    mhl,

    Radiation is a common and accepted therapy for all patients, whether there is metastasis or not. As lighterwoods mentioned below, in cases where there IS metastasis, radiation in general is preferred by most medical authorities as more effective.

    You mention 'types' of radiation therapy (RT).    Among the more common, established technologies (I am not getting into anything experimental or in clinical trials), absolutely the most common RT for prostate cancer (PCa) is IMRT.  This has an excellent track record, and is available EVERYWHERE.  It is considered virtually identical with surgical removal for curative effect (eradicating all of the cancer).   A very similiar but somewhat upgraded technology is IGRT, and nearly all cancer centers have this tooday also, often in the same machine they use for IMRT.

    A not new, but newer technology is SBRT radiation, under the trade names of Cyberknife or Varian TrueBeam.  These also are widely available, and are equivalent in effectiveness with IMRT/IGRT, but SBRT has easier delivery: whereas IMRT usually requires around 35 visits to a radiation center of about 1 hour each, SBRT is usually completed in around five or so visits to the center.

    'Seeding,' or Brachytherapy, involves inserting tiny, radioactive pellets inside the prostate gland.  This can be the easiest technique of all, but is usually not recommended for advanced or aggressive disease.

    The other technique is proton therapy, which several guys have commented on.  Most writers here usually recommend that a patient meet at least one radiation oncologist before making a treatment choice.