My story and looking for questions in preparation for surgeon consultation

lesjanes
lesjanes Member Posts: 67 Member
edited July 17 in Prostate Cancer #1

My doctor has been monitoring my PSA for several years, thankfully. The last several years PSA readings have been relatively stable 3.096, 3.166, 4.231 , 3.826, … then 5.4. The reading of 3.86 was accompanied by a free PSA % of 13. And the free PSA % was the first alert that I need further examination. So off to the Urologist for the first time in my life. Urologist did prostrate exam, and said it felt very normal. But biopsy should be done. April 2023. Biopsy (I was awake in office…no big deal) came out negative on all 12 samples. Good news. Next PSA test in 6months.

PSA test in November 2023 was 5.4 and free PSA % was now 7. The lower free PSA % concerning to my Urologist, so he ordered an MRI. I saw the results before the Dr spoke with me.

1 - focal signal abnormality in right anterior peripheral zone…. high suspicion of clinically signifiant cancer
2 - focal signal abnormality in right posterolateral peripheral zone…. medium suspicion of clinically signifiant cancer
3 - Seminal vesicles and expected regions of neurovascular bundles appear grossly unremarkable.

Of course I started to freak out, especially since my next Drs appt was 4 weeks out. To me every day the cancer is just growing and spreading. (I have a learned alot about PC since this time though). Fortunatley the DRs appt was moved up to two weeks. Dr was very reassuring that I should not read into the results too much. MRIs analysis is not 100%. He did another prostrate exam and again said that my prostrate felt normal and wouldn't think I had cancer just by how the Prostate felt. So all reassuring but another biopsy should be done.

Biospy done Feb 12th (knocked out for this one)… Results,,,,,out of 14 samples only 1 came up positive. Gleason score 3+4=7 (Grade Group 2).

Had my Dr follow up visit on 2/27. Dr explained the Gleason score and also indicated that PC is in the very early stage and appears contained. So that is all very good news, considering that I have cancer. So now the hard part, what do I do? The DR went through all the options Active Surveillance, Radiation, and Prostratectomy. So I guess it is good that because it is early I have options, right. But now the daunting task of getting more educated, decidiing who to go to for a second opinion, etc… everyone on this forum knows the routine. But it is daunting to figure out the right thing to do. And the 2nd opinion DR was leaning heavily on active surveillance. (he relied heavily on European PC studies)

After talking with several PC survivors (all 10 years+), reading up on all the options, and reviewing everyones personal experiences on this board, I have decided to go the Prostratectomy route. I just feel like with Active Surviellance, I will have the sword of damocles hanging over my head, worrying about each PSA test and future biopsies.

I have selected a surgeon from the same parctice as my original Urologist and decided on the one that has done the most robotic surgeries. My consultation with him is 4/17.

In prepration for my consultation, I want to ensure I ask the right and enough questions. So, do any of you have any suggestions on things I should ask my Dr in preparation for surgery? Many of you have already gone through this, so I feel you have more insight than me on what to ask.

I am 68, 194 pounds, in relative good health, with no heart issues and no medications.

Thanks to everyone in this forum for sharing your very personal and often humbling stories.

Thanks

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #2

    Hi,

    First question would be how many removals have you done, his answer should be around 500+ with the more the better. Second question would be will it be done robotically, which should be yes. You might also go for a second surgical opinion for extra input and info even if you plan to stay with your first choice. If things go OK you will probably spend the night in the hospital being discharged the next day. Also check online for a doctor rating to see what kind of rating he received from his past patients. Remember great doctors + great facilities = great results. Good luck……..

    Dave 3+4

  • lesjanes
    lesjanes Member Posts: 67 Member
    #3

    Clevelandguy thanks! I have selected my surgeon based on the number of prostratectomies he has done compared to the Illinois state average listed on https://health.usnews.com/ in a siding bar graph. He appears to be far above the state average, but I don't how many that equates to. Are there any websites that say how many prostratectomies a surgeon has done? Or will just have to ask him?

  • centralPA
    centralPA Member Posts: 322 Member
    #4

    I would ask the surgeon about active surveillance too, even though you’ve made your decision. Just to help confirm it.

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #5
    https://csn.cancer.org/discussion/comment/1714668#Comment_1714668

    Hi,

    I would just ask the surgeon, with your stats I would think that AS would not be in your future but I guess you could ask.

  • Weswill
    Weswill Member Posts: 2 Member
    #6

    From what I've read from you, it seems like you and I are in the same boat. This morning I visited my maybe 6th urologist and this one explained the difference to me between reradiation and surgery, after hearing that I've decided on surgery. After 3 years of active surveillance and the results of my 4th recent biopsy, I scheduled the surgery 2 weeks from today. Seems like I may not have much more to share with you than you already know. But thank you for pointing out one of the criteria for choosing a surgeon (at least 500 prostatectomies done).

  • lesjanes
    lesjanes Member Posts: 67 Member
    #7
    https://csn.cancer.org/discussion/comment/1714676#Comment_1714676

    Good luck on your surgery. Out of curiosity, how has your Gleason Score changed over your 4 biopsies?

    Also, even though the process of the biospy was not terrible, I don't want to go through those anymore. The bloody semen took about 3-4 weeks to clear out, and frankly its kind of disgusting. Also, after my recent biospy, my orgasms for 4-6 weeks were a little uncomfortable. I guess the prostrate needs to recover from being jabbed 12-14 times. No one told me that.

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #8

    You could ask your surgeon if he does single incision robotic surgery. He probably doesn't because it's a newer technique.

    2. ask him about what his 'typical' margins are.

    3. ask him about examining (and possibly removing) the pelvic lymph nodes during surgery

    4. ask him about preserving the nerve bundles and your chance(s) of becoming (permanently) incontinent

    5. ask him about your chances of getting erectile dysfunction and what he plans to do about that if it happens.

  • lesjanes
    lesjanes Member Posts: 67 Member
    #9
    https://csn.cancer.org/discussion/comment/1714679#Comment_1714679

    Thanks for those suggestions! I appreciate it. I will incorporate them into my conversation with him.

  • lesjanes
    lesjanes Member Posts: 67 Member
    #10

    I just got the pathology report from my DR. Lymph nodes negative and clean margins. I was Gleason 3 +4 7 and contained going into my prostatectomy. So I felt that the pathology report would likely be good. Yet when I heard the news I broke down with tears of joy and relief. Everyone here knows the roller coaster you go on from diagnosis to treatment. I thought I was preprared but I guess I wasn,t totally prepared…even for good news.

    Now for the next phase of incontinence….catheter comes out Friday.

    Thank you to everyone for your advice and personal stories. And good luck to everyone who is just starting this journey.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #11

    Everything seems fine. You are on your way to the success. I hope you have knocked down the bandit for good. Let's wait for an undetectable PSA.

    Congratulations

  • lesjanes
    lesjanes Member Posts: 67 Member
    #12

    Well I am 16 days past surgery and 8 days past catheter removal. Once the back pain dissipated, all other pain was minimal and went without pain meds. And I am feeling relatively normal, except for the incontinence.

    First, when I pee, I can now pee for record distance. I can pee 7-8 feet, which is impressive when outside, but rather problematic indoors. Also, the pee is like a fire hose when I first wake up. Is this because my urethra hasn't yet fully recovered? Or because my plumbing is shorter between bladder to exit? Will I continue to pee like this, or will it get back to normal?

    I am going through 4-5 pads a day. I seem to hardly leak at all at night (which is good), but it gets progressively worse as the day goes on. I problable use1 pad for the first 6-8 hours of the day. And 3 to 4 pads the remainder of the day.

    Does this sound similar to others' experiences?

    Thanks!

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #13

    Hi,

    Urinating with a higher force is typical, at least it was for me. At roughly 16 days past surgery you will leak a lot. The major thing is to see less leakage weeks and months ahead. No two people are the same so it’s hard to quantify a standard on how much/when. Are you doing your Keagal exercises daily?
    Dave 3+4

  • Marlon
    Marlon Member Posts: 111 Member
    edited July 28 #14

    I am 5 weeks past surgery and yes improvement in retention comes in small gains. Currently, I can go from midnight to noon on one pad, and 3-4 for the rest of the day. I can see the bladder capacity gradually increasing. When you're sleeping, you're lying down and there is less downward pressure (gravity) on your bladder, so it accumulates more overnight. I find a direct correlation between how much I drink and when, to how much leakage I'll have. All part of planning your day and activities.

  • lesjanes
    lesjanes Member Posts: 67 Member
    #15
    https://csn.cancer.org/discussion/comment/1717001#Comment_1717001

    Thanks for the reply. And yes, I am doing kegels. I need to schedule pelvic floor PT this week.

  • lesjanes
    lesjanes Member Posts: 67 Member
    #16

    Thanks ! Seems like you and are on the same path.

  • lesjanes
    lesjanes Member Posts: 67 Member
    #17

    5 weeks out of surgery, still some incontinence (3-4 pads per day), but mostly slow dripping like a leaky faucet.

    But that is not me real concern right now. I am getting rather tired of missing the toilet, either because its a fire hose, or more recently spraying versus a steady stream.

    What causes spraying or a split stream? and will this abate with time? Is this caused by my urethra being stretched from catheterer? Kinda frustrating not knowing where my pee is going unless I sit down. I told my wife we need a urinal….that was voted down…lol

  • Marlon
    Marlon Member Posts: 111 Member
    #18

    lesjanes, I am 7 weeks out from surgery. Still some leakage, but much less than before. Improvement seems to come overnight after days of no change. Not sure what to expect long-term, but outlook is not as bleak as it was.

  • Clevelandguy
    Clevelandguy Member Posts: 1,180 Member
    #19
    https://csn.cancer.org/discussion/comment/1717398#Comment_1717398

    Hi,

    Sitting down sounds like the solution.

    Dave 3+4



  • Marlon
    Marlon Member Posts: 111 Member
    #20

    I think sitting down is not preferred because it doesnt let the bladder fully drain. Could be wrong.

  • lesjanes
    lesjanes Member Posts: 67 Member
    #21

    I prefer not to sit, but I am occasionally.

    But my real question is....why is it spraying now and will that go away?

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