Scheduled for Surgery - What can I expect?

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Carluvrj
Carluvrj Member Posts: 13 Member
edited October 2022 in Prostate Cancer #1

Hello,

I am a 53 year old male. Diagnosed a few months ago. Slow growing, low gleason score, recently my PSA went from 7.6 to a 9, so with my doctor, I have decided for robotic removal.

Been doing some research, but feeling a little lost and overwhelmed. I would love to hear from anyone who has been through this surgery and their experience.

I feel it is the best option to go with so I can get this taken care of .

Thank you in advance.

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  • Old Salt
    Old Salt Member Posts: 1,409 Member
    edited July 2022 #2
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    What did the MRI show and any other scans you may have had?

    IMHO, you really should investigate other options. There are various radiation therapies that could be used for a case like yours. I recommend consulting with radiation therapy specialists, not your urologist about these. Typically, urologists like to recommend surgery because that's what they do.

    You have time to do this! Then decide whether surgery is the best option for you.

    PS: I am by no means against surgery for a young(er) person, but I do hope that patients consider all reasonable options.

  • Carluvrj
    Carluvrj Member Posts: 13 Member
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    Hi,

    Thank you for your reply. The cancer is a recent development from a biopsy. At the time I had an MRI there was no cancer showing. They are recommending surgery as the best chance to cure with no recurrence . They said if they do radiation and it recurs, surgery can be more complicated. They said the biopsy only tests a certain number of cores and there could be more that just was not tested. If I was older they would explore radiation or cyberknife. You are correct in that I did consult two urologists and yes, they both recommended removal for piece of mind that it would not recur.

  • centralPA
    centralPA Member Posts: 309 Member
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    Did you consult with a radiologist at all?

    Talking with two urologists who specialize in surgery, and having them both recommend surgery…

    I recommend reading “Invasion of the Prostate Snatchers” by Dr. Mark Scholz. Here’s the google preview. Not saying surgery isn’t ideal, just think you should do some more info gathering.

    https://books.google.com/books/about/Invasion_of_the_Prostate_Snatchers.html?id=v77jDwAAQBAJ&printsec=frontcover&source=kp_read_button&hl=en&newbks=1&newbks_redir=0&gboemv=1#v=onepage&q&f=false

  • jeffman
    jeffman Member Posts: 46 Member
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    My PSA was at 44 yet the biopsy showed cancer in only 2 samples. Subsequent MRI showed large mass pushing its way out. As the doc told me "the horese was about to leave the barn". Had a quick bone scan then robotic surgery. One night in the hospital and a week with a catheter Not a lot of fun but it sure beat the alternative. We got it just in time and now I am undetectible since 2017. There are some side effects that vary with each patient, but they are tolerable and , again, beat the alternative.

    (I was 64 when I had the surgery)

    Whatever you decide I wish you luck.

  • Rob.Ski
    Rob.Ski Member Posts: 155 Member
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    I'm 51 and had surgery last Feb. I was diagnosed with Gleason 3+3 originally and did active surveillance for almost a year. Had a second biopsy 10 months later that was still 3+3 but, volumes were 100% & 70% in 2 of the 6 positive cores, PSA was around 4.7. This was pushing the AS boundaries with the high volumes. The doc running the AS said she didn't have patients my age with the high volumes although, didn't say I needed to quit AS. Got another PSA 6 months later and was over 5. Felt like it was time. I chose surgery. Both radiologists I spoke to suggested surgery for the same reasons you mentioned. Better options if there is recurrence.

    Surgery was pretty smooth, 1 night in hospital. Not too bad a recovery, catheter is annoying but, tolerable. Pathology after surgery was 3+4. First PSA after surgery was undetectable. Pretty much continent after catheter removal and sexually active (with help of vitamin V). Feel I was pretty lucky escaping side effects.

    If you haven't talked to a radiologist, you probably should. Get as much info as you can to make the best decision for yourself. Everyone is different, not all outcomes are the same.

  • Carluvrj
    Carluvrj Member Posts: 13 Member
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    Thank you. Mine is really early. I am only 4% of one core (I think) with the same Gleason. I will see about consulting a radiologist. Part of me feels like surgery is the best way to get piece of mind of being cured. I don't plan on having kids so just not sure the benefit of keeping it. Helpful to read your experience.

  • Carluvrj
    Carluvrj Member Posts: 13 Member
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    Thank you for sharing. They have pretty much told me what you described as the surgery experience. But I do think I have some more questions to ask now.

  • Rob.Ski
    Rob.Ski Member Posts: 155 Member
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    Based on the information you mentioned 4% in one core, you might also consider talking to doc that specializes in Active Surveillance if you have not already. Explore all your options and make the best decision for you. Some people stay on AS for a long time putting off the potential impact to quality of life from treatment. Some people just want it out.

  • Clevelandguy
    Clevelandguy Member Posts: 1,084 Member
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    Hi,

    Do you remember what your Gleason score was? If it was 3+3 with low volumes you have time to study the big three, Active surveillance, surgery, or radiation. Just make sure that you keep in mind that all three can have side effects from chances of infections to ED or urine leakage. I also would talk to a Oncologist/Urologist maybe even from a different hospital network. I had surgery with about the same results of Rob.Ski in 2014 and I am still undetectable. Don’t mean to confuse but there have been bad surgeries and radiation treatment results so there are no guarantees, choose wisely. It’s really your choice after consulting with your family and doctor team. Great doctors +great facilities = great results, I have included a link to get you started.


    Dave 3+4

  • Old Salt
    Old Salt Member Posts: 1,409 Member
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    Surgery is serious business, so if you do decide to go that route you want to make sure your urologist/surgeon has serious experience with the robotic system AND an excellent record with respect to outcomes.

  • centralPA
    centralPA Member Posts: 309 Member
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    If you are "just" Gleason 3+3 and 4% in 1 of 12 biopsy samples (I assume) then you have a lot of time to really sort out and explore your options. Some things to consider:

    I get that you are probably freaked out at the thought of cancer percolating in your prostate, been there and doing that myself. You want it out yesterday. I worry that you don't fully understand the decision space.

    Are you up to date on probability of ED and urinary incontinence from RALP? Shortening of penis? Peyronie's disease? Similarly for radiation treatments? Time frames?

    With nothing popping up on your MRI, and I assume nothing felt on the digital rectal exam, based on what you've told us you likely fall into the Very Low Risk category for prostate cancer. As per the NCCN guidelines, Active Surveillance is the preferred treatment path currently for that category, with surgery and radiation secondarily recommended. This could allow you to watch and monitor while the treatment techniques continue to bound forward, and your urologist continues to hone his surgery skills.

  • Carluvrj
    Carluvrj Member Posts: 13 Member
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    Thanks. I am absorbing all of the comments coming in and doing further research. The surgeon is very highly experienced and rated in the surgery. He's actually an innovator with robotic surgery.

  • Carluvrj
    Carluvrj Member Posts: 13 Member
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    Hi,

    Thanks. You have hit on many things which I have not been fully educated on. I know there are risks no matter which path I take. My PSA jumped two points again, so it did freak me out a bit. Right now I am in active surveillance, just not sure I can mentally do this if numbers keep rising. I have made an appointment with a radiation oncologist as sever have suggested. I am already having some ED issues, but no identified reason other than age. My MRI is not recent. It was done a year or so ago, the most recent Biopsy was in February of this year.

    Not sure if I can still get a biopsy sample for a Decipher test. I have been told this is local and slow growing.

    You are correct, I don't fully understand the decision space, but the posts are helping.

  • Carluvrj
    Carluvrj Member Posts: 13 Member
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    Yes, my Gleason was 3+3. I guess I have time. They have been doing AS on me for the past year or so as my PSA was going up, hence why they caught it so early. I am going to go for a radiation consult. This is much harder than I ever thought. I am having some issues, so part of me just wants this taken care of and have piece of mind, but I am taking into account the input from this post as well. Thanks

  • TopDog82
    TopDog82 Member Posts: 9 Member
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    Greetings. I'm also looking at options, though my bone scan results have to be sorted out first. My father had the robotic prostatectomy about 20 years ago (he's 84 now). He is satisfied with the results. He is pretty much continent at this point, though he wears a pad for minor, occasional leakage. He did say he's unable to have an erection without some sort of intervention. His PSA has only just been detectable this year at about 0.3. One of his younger brothers had (I think) a traditional prostatectomy about 15 years ago in his early 60s. He said his surgery was more involved because the tumor affected his bladder. He's not continent at all, nor does he have any sexual function. He's not happy about the results, but thankful to be alive. His PSA is virtually undetectable.

  • ASAdvocate
    ASAdvocate Member Posts: 193 Member
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    With one core of Gleason(3+3), and a PSA of 9, you are low risk.

    Over sixty percent of newly diagnosed low risk men are now choosing active surveillance. I was diagnosed as Gleason 6 in 2009, and have had zero progression of my pathology.  Why risk the often lifelong damage from interventional treatment if you don’t need it?

    The just-released guidelines from the American Urological Association and the American Society of Clinical Oncology state that active surveillance is the preferred treatment for low risk prostate cancer. They rate that as supported by Level A evidence.

    However, first biopsies often miss higher grade cancers, so an MRI and a targeted confirmatory biopsy within six months is recommended to help assure that you are correctly diagnosed.

    https://www.auanet.org/guidelines/guidelines/clinically-localized-prostate-cancer-aua/astro-guideline-2022?fbclid=IwAR1GNIWfqOK3GGjoqvVS4SX7JEPb_lidDEpg0vLDgaJlbP0yaUhEPQENjxY

  • Tico14
    Tico14 Member Posts: 38 Member
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    Carluvrj, Follow the advice given here. I wish I had. I had about 20 years on you when I had my biopsy. I didn't know anything just relied on my URO. Didn't get a second opinion, didn't know about CSN, didn't consult with a radiologist, oncologist, nada! My mindset was, "I don't want cancer in me. I want it out now! I want it out now." While my PSA 4 years post surgery is still virtually undetectable (<.01), nothing below the waist works as it did before except for the urine part. It goes all the time.

  • Carluvrj
    Carluvrj Member Posts: 13 Member
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    Thank you. My best to you. I am following the advice and doing more research and getting more opinions and I will most likely at minimum postpone the decision to have surgery.

  • centralPA
    centralPA Member Posts: 309 Member
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    Carl, full speed ahead on getting educated.

    It's mostly up to you to do it. Doctors just don’t have the time to share everything they know about prostate cancer. Even if you spend a full hour or two with your Uro, you are only getting a wavetop touch on their knowledge. Same with a RadOnc. But with the internet, it’s all there for the taking. Got to be smart about it.

    I have never been to a doctors meeting since I started educating myself that I didn’t already know most of what they were going to say. At first that kind of bummed me out, as in why am I paying for this consultation? Now, I realize it lets me evaluate if they are up on the latest, following best practices, and can I trust them with life decisions. I think they appreciate me showing up educated and understanding there are trade offs too. Can skip the basic stuff and move into the real decision making. Nothing slam-dunk about this, every choice has tradeoffs. Be smart, gather your knowledge, then commit.

    Best of luck, shipmate.

  • JP63
    JP63 Member Posts: 33 Member
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    How did your surgery go?

    Mine went much better that what I was thinking.

    I am so glad that they were able to do it. You never know until they take out that thing what its really happening.

    I already had EPE.....the 3T MRI said otherwise....STAGE 3TaN0Mo....not too bad but I am happy I did not do HIFU or watchful waiting or whatever they call it. What for? Wait until the thing gets to a seminal vesicle or a lymp node??

    Even a multiparametric 3T MrI can only see so much....