My story and looking for questions in preparation for surgeon consultation

lesjanes

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

Clevelandguy

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

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

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

Clevelandguy

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

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

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

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

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.