Prostate cancer surgery: What can I expect & prepare for?

Posted by justmike74 @justmike74, Nov 19, 2022

48 about to have prostate removal surgery
Just needing some advice or experiences of survivors of this, what to expect and what to prepare for.

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@hammer101

When I found that my PSA was significantly elevated and the PSA increase-velocity was high, I did about 40 hours of online research. The common theme for maximizing the best possible outcome was finding the best surgeon/medical center available to you. For me, this turned out to be the Mayo Clinic in Rochester, MN and Dr. Igor Frank. The Mayo Center has the latest technology and Dr. Igor Frank is a highly ranked surgeon. He was the second surgeon in the US to perform robotic assisted prostatectomies and has been doing them since 2005. Also, his area of focus is very narrow - He performs prostate and bladder cancer surgeries (my research found that focus and repetition were both highly recommended when looking for a surgeon). Please note - You need an experienced surgeon for a radical prostatectomy, your quality of life going forward will depend on it. Based on my age (56) and Gleason Score (7 --> 4/3), I chose the radical prostatectomy and lymphadenectomy. This is the most aggressive option, but I found it gave me the best chance for long term survival and alternate treatment options (if needed) going forward. As mentioned by many others, this decision is personal and is based on what is best for you and your situation.
I am very active, in good shape, thin, and on the lower portion of the age group that has prostate cancer. Recovery from the robotic assisted RP went quite well. For me, the first week was the worst part - Catheter (#1), referred pain in the should from the gas used during surgery (#2), and bowel movement constipation/difficulty with catheter (#3). I used Oxycodone for the night I stayed in the hospital. After that, my wife kept my pain in check by alternating Ibuprofen (3 tablets, 200 mg) & Acetaminophen (2 tablets, 500 mg) every 3 hours. This kept my pain to a low level, very tolerable. Please note - Nothing could control my referred gas pain (occurred when I sat up). I spent the first five days walking or laying at an upward angle in bed. For the first week, anytime I would completely sit up, the referred gas pain in the shoulders was very high.
Overall, my body feels almost normal after three weeks (RP on November 3, 2022). I did find that I was more tired for the first three weeks, but a short nap really helped. For me, I do have incontinence issues following the FP, as I expected to have - leakage after drinking water, approximately one accident per night, unreliable bladder. This is not a big issue, but something that I am glad I was aware of prior to recovery. I am confident that I will regain bladder control, will just take time.
I am still waiting for my final pathology report. This has been a challenge - Previous tests lead my doctor to believe the cancer was contained in the prostate, but this is not known until final pathology is complete for the prostate, seminal vesicles, and lymph nodes.
QUESTION - Has anyone had a negative margin with the pathology report, and later had chemical reoccurrence of their prostate cancer? I found some data from Johns Hopkins that showed with a Gleason Score of 6 (3/3), reoccurrence was almost zero. Because I have a Gleason Score of 7 (4/3), I have not been able to find any data.

Take care,

Jim

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Thanks for sharing this detailed information, and especially for giving me your surgeon’s name. I’m 55 years old by the way. Because I’m at a level of Gleason 6 and a low percentage based on the biopsy, my urologist is suggesting active surveillance. He scheduled an MRI for March of next year, but I asked why we would wait 6 months to get a better understanding of what we’re dealing with. So we rescheduled for next week to get the MRI. I think I’m going to send the results to the Mayo Clinic to get their opinion. I live in Atlanta, so Jacksonville would not be bad from a geographical standpoint, but I’d be willing to travel anywhere to ensure I have the best surgeon assuming I choose to go with RP at some point.

Thanks again!

REPLY
@hammer101

When I found that my PSA was significantly elevated and the PSA increase-velocity was high, I did about 40 hours of online research. The common theme for maximizing the best possible outcome was finding the best surgeon/medical center available to you. For me, this turned out to be the Mayo Clinic in Rochester, MN and Dr. Igor Frank. The Mayo Center has the latest technology and Dr. Igor Frank is a highly ranked surgeon. He was the second surgeon in the US to perform robotic assisted prostatectomies and has been doing them since 2005. Also, his area of focus is very narrow - He performs prostate and bladder cancer surgeries (my research found that focus and repetition were both highly recommended when looking for a surgeon). Please note - You need an experienced surgeon for a radical prostatectomy, your quality of life going forward will depend on it. Based on my age (56) and Gleason Score (7 --> 4/3), I chose the radical prostatectomy and lymphadenectomy. This is the most aggressive option, but I found it gave me the best chance for long term survival and alternate treatment options (if needed) going forward. As mentioned by many others, this decision is personal and is based on what is best for you and your situation.
I am very active, in good shape, thin, and on the lower portion of the age group that has prostate cancer. Recovery from the robotic assisted RP went quite well. For me, the first week was the worst part - Catheter (#1), referred pain in the should from the gas used during surgery (#2), and bowel movement constipation/difficulty with catheter (#3). I used Oxycodone for the night I stayed in the hospital. After that, my wife kept my pain in check by alternating Ibuprofen (3 tablets, 200 mg) & Acetaminophen (2 tablets, 500 mg) every 3 hours. This kept my pain to a low level, very tolerable. Please note - Nothing could control my referred gas pain (occurred when I sat up). I spent the first five days walking or laying at an upward angle in bed. For the first week, anytime I would completely sit up, the referred gas pain in the shoulders was very high.
Overall, my body feels almost normal after three weeks (RP on November 3, 2022). I did find that I was more tired for the first three weeks, but a short nap really helped. For me, I do have incontinence issues following the FP, as I expected to have - leakage after drinking water, approximately one accident per night, unreliable bladder. This is not a big issue, but something that I am glad I was aware of prior to recovery. I am confident that I will regain bladder control, will just take time.
I am still waiting for my final pathology report. This has been a challenge - Previous tests lead my doctor to believe the cancer was contained in the prostate, but this is not known until final pathology is complete for the prostate, seminal vesicles, and lymph nodes.
QUESTION - Has anyone had a negative margin with the pathology report, and later had chemical reoccurrence of their prostate cancer? I found some data from Johns Hopkins that showed with a Gleason Score of 6 (3/3), reoccurrence was almost zero. Because I have a Gleason Score of 7 (4/3), I have not been able to find any data.

Take care,

Jim

Jump to this post

I have had recurrence with a negative margin path, the issue with me was even though the margins can be clear, there can be Lymphovascular invasion which is what I had.

They did removed the right pelvic lymph node (as most of the cancer was on the right side of the prostate) and that tested negative.

About 9 mos after surgery my PSA started to rise again and I went for Salvage Radiation Therapy. Waiting on second PSA test after that which will be next week.

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@web265

Regarding..."my husband has quite a bit of discomfort sitting on regular chairs, just behind base of penis and in front of anus"
I bought a cushion...
https://smile.amazon.com/gp/product/B01IM5CFZM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
It helps with harder straight chairs like a desk chair, but, yes, he'll be elevated a couple inches.

I stayed in the recliner for the most part the first couple weeks or so when sitting, or sort of half reclined on the couch, propped up on pillows.

Unfortunately for me, that sensation stayed around for months. Anytime I sat on a narrow bench at the gym I really felt it. Eventually it goes from light paint to annoyance to "huh, that feels odd" but only on un-padded straight chairs.

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Thanks for the link, looks like might be a good option. Also good to know that the pain may take a few months to gradually settle as then don’t have the expectation should be fine in a week. Thanks 🙂

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@dcdixon

2 or 3 times a day during the first week I spent about 15 minutes or so reclining on a soft couch with an ice pack tucked gently between my legs. It seemed to help with the pain and reduce the swelling.

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Thank for the advice 🙂 He was applying ice packs to his incision region but didn’t think to apply to the area painful when sitting. Trying that now 🙂

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@paulchen

Thanks for sharing this detailed information, and especially for giving me your surgeon’s name. I’m 55 years old by the way. Because I’m at a level of Gleason 6 and a low percentage based on the biopsy, my urologist is suggesting active surveillance. He scheduled an MRI for March of next year, but I asked why we would wait 6 months to get a better understanding of what we’re dealing with. So we rescheduled for next week to get the MRI. I think I’m going to send the results to the Mayo Clinic to get their opinion. I live in Atlanta, so Jacksonville would not be bad from a geographical standpoint, but I’d be willing to travel anywhere to ensure I have the best surgeon assuming I choose to go with RP at some point.

Thanks again!

Jump to this post

Being the same age (just turned 56), I would be very concerned with a doctor that recommends active surveillance for Gleason 6 prostate cancer. From the research I have done, at your "young age" for prostate cancer, more aggressive treatment would be recommended. I read a paper from Johns Hopkins that showed Gleason 6 patients that have a radical prostatectomy are for the most part "cured". When I found that I had prostate cancer, I was praying for Gleason 6 (3/3). Unfortunately, my biopsy found that I had Gleason 7 (4/3). Either way, I knew that a radical prostatectomy was the way to go for me (lower age, good physical condition, etc.). I have not done any research on Mayo-Jacksonville, but I did quite a bit on Mayo-Rochester and was extremely happy with RP outcome. If you chose Mayo-Rochester, there are a lot of house/condo rentals - We were able to find a very nice condo (only a few years old), 4 blocks from the Methodist campus, for a very reasonable cost. We ended up staying two week, just in case there were any complications (no complications but highly recommend this).
BTW, just got my final pathology back - Awesome news, all negative margins, cancer contained within the prostate and lymph nodes & seminal vesicles clear. The only bad news was that they did find Tertiary Pattern 5. This is an indicator of biochemical relapse in patients with Gleason score 7. Based on my situation, I would highly recommend getting a second opinion. For you, they found Gleason score 6 with the biopsy. Biopsies are a good indicator, but when they do the final pathology of the prostate/seminal vesicles/lymph nodes, they could find more advanced cancer. For me, mid-50's was far too young to let active cancer continue to grow in my body. The robotic radical prostatectomy was not a significant surgery for myself - First week was quite bad (catheter, referred gas pain, bowel movements), but after the catheter is out, it is all about regaining your bladder control. This is a little bit inconvenient, but I just wear a low flow diaper expect this to go on for up to a year. Obviously, complications can occur, so you need to go into the surgery understanding all potential issues.
Good luck with your decision and please feel free to reach out if you have any questions about Mayo-Rochester or what to expect with the Radical Prostatectomy.

REPLY
@web265

I have had recurrence with a negative margin path, the issue with me was even though the margins can be clear, there can be Lymphovascular invasion which is what I had.

They did removed the right pelvic lymph node (as most of the cancer was on the right side of the prostate) and that tested negative.

About 9 mos after surgery my PSA started to rise again and I went for Salvage Radiation Therapy. Waiting on second PSA test after that which will be next week.

Jump to this post

Thanks for sharing. Curious, did they take only one lymph node or several? Also, would you be willing to share your Gleason score? My pathology showed that all cancer was contained to the prostate and the six lymph nodes they removed were clear. The one negative was a minor tertiary Gleason pattern 5 that indicates a higher potential reoccurrence. Curious, did you have any tertiary Gleason pattern 5?
Hope you had a great Thanksgiving,

Jim

REPLY
@hammer101

Thanks for sharing. Curious, did they take only one lymph node or several? Also, would you be willing to share your Gleason score? My pathology showed that all cancer was contained to the prostate and the six lymph nodes they removed were clear. The one negative was a minor tertiary Gleason pattern 5 that indicates a higher potential reoccurrence. Curious, did you have any tertiary Gleason pattern 5?
Hope you had a great Thanksgiving,

Jim

Jump to this post

They just took the one, it was labeled "right pelvic lymph nodes" but the description of the sample was for one, it was negative.
Gleason was 4+3
The primary and secondary are spelled out but the word tertiary does not appear in the pathology report at all.

REPLY

Thanks so much for the extra detail and pray all goes well for your follow up treatments. My doctor said told me that if my cancer comes back they would do scans to determine where the cancer is located. Did they find where your cancer came back or are they treating the prostate base?

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@hammer101

Thanks so much for the extra detail and pray all goes well for your follow up treatments. My doctor said told me that if my cancer comes back they would do scans to determine where the cancer is located. Did they find where your cancer came back or are they treating the prostate base?

Jump to this post

After the RP the PSA went up to .09 and we did the PSMA PET CT Scan with radioactive dye, it was negative. I learned here that it's typically negative at that PSA level, until your up a bit more, the chances of the scan finding anything are pretty low.

So.. the radiation was the "surgical bed" I think they call it, and lymph nodes around the surgical bed for about the first 29 treatments, then the last bunch are just the surgical bed. (which I guess is the same as the prostate base).

If you click on the chart, you'll be able to see the entire thing. I have no idea why it looks like this...

REPLY
@web265

After the RP the PSA went up to .09 and we did the PSMA PET CT Scan with radioactive dye, it was negative. I learned here that it's typically negative at that PSA level, until your up a bit more, the chances of the scan finding anything are pretty low.

So.. the radiation was the "surgical bed" I think they call it, and lymph nodes around the surgical bed for about the first 29 treatments, then the last bunch are just the surgical bed. (which I guess is the same as the prostate base).

If you click on the chart, you'll be able to see the entire thing. I have no idea why it looks like this...

Jump to this post

Thanks for the additional detail, helps me understand what to expect if I have an increase in PSA going forward. Now that I have an example for the PSMA results, I will be investigating to understand this more. Sounds like your doctors are being very proactive in radiating the prostate base to ensure the cancer does not spread outside the prostate surroundings.

Have great week,

Jim

REPLY
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