After treatment discussions

Posted by jc76 @jc76, Sep 24, 2023

Went through the agonizing decision making like most of you. Decided on proton radiation as UFPTI. 30 rounds of radiation over 6 weeks. Finished July 5th. I think I had every test possible. MRI, CT, PET, Bone, biopsies, Decipher more CTs with contrast.

Just had my first PSA test post (3 months) treatments. Went from 3.75 to 1.2.

Would like feedback on others with post treatment PSA test and your numbers. Is the drop I had good, normal even at 3 months? I know the prostrate is still irritated and takes time to get to a base number. What was others base time frame?

I see others are also finishing treatments with same questions. What was post radiation treatments symptoms like urine retention urgency, dribbling? Seems I urinate a lot still but funny thing it seems to be a lot more when I drink coffee even though decaffeinated. I still get up about every 2 hours at night to urinate.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I had mine taken out 2 months ago. Lab said no spread, CAT S, no spread as well as a Bone S. I go back in 5 weeks and get the new Blood Work post surgery. If PSA is not 0 or close to it, A PMSA Pet Scan would happen and then if a spot inside where the prostate was, Lupron if outside where the prostate was, Targeted Beam Radiation.; I pee early in tne morning, early in the evening and at suppertime, UNREAL I take this pill twice a day and it helps some, Minapine but I bet most days I pee almost 200 times a day. I still can't roll onto my right side. I am exercising hard again and doing a lot of Core exercises too. I have 5 friends who went through this surgery and now all of them are peeing about normal

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After lots of back and forth on options ny husband elected for robot assisted prostatectomy done mid June at Mayo Rochester. Post surg pathology was all great news. Recovery has been good regarding incontinence. We think he's had very little issue because he's done exercises for years for low back pain. These basically strengthen his core and pelvic area and are similar to kegels. Normal peeing, up maybe once at night. Wears a thin pad daily for reassurance but is usually dry. Carries cough drops in his pocket as that is the one trouble trigger. The 3 month PSA was another piece of good news at less than .10, basically non-existent. Best of luck to all you guys. This has been a tough journey. We are feeling so grateful for answered prayers and so much loving support.

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I had the mridian in Febuary. 5 hypo fractional Treatments. No ADT. My PSA started at 10.29 on 10/5/2022 . Three blood tests since then: 3/31/2023 psa of 4.61, 5/25/2023 psa of 2.99 and 9/12/2023 psa of 1.4. Down is good.

I was told by my RO that normal urination would not recover fully and so far she has been right. It flows enough now that I do not think about it much. I am up once per night every once in a while but usually that is because I have had more liquids (water or coffee) before I go to bed. I never had any dribbling or used any pads. Different times of day have different slight restriction patterns. Sometimes sitting vs standing and visa versa works better for flow.

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@jwoy

After lots of back and forth on options ny husband elected for robot assisted prostatectomy done mid June at Mayo Rochester. Post surg pathology was all great news. Recovery has been good regarding incontinence. We think he's had very little issue because he's done exercises for years for low back pain. These basically strengthen his core and pelvic area and are similar to kegels. Normal peeing, up maybe once at night. Wears a thin pad daily for reassurance but is usually dry. Carries cough drops in his pocket as that is the one trouble trigger. The 3 month PSA was another piece of good news at less than .10, basically non-existent. Best of luck to all you guys. This has been a tough journey. We are feeling so grateful for answered prayers and so much loving support.

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Delighted your husband is making great progress after his RP. I’m scheduled for RP at Mayo Rochester in late October. Such comfort for me to read this post. I’m anxious but not scared, probably more impatient than anything else to get it done. I work out regularly, at least 2x week so my core is reasonably strong. Were there any other things your husband did the month before surgery to prepare himself? Thank you and continued good health for you both.

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My journey started with a PSA of 4.63 in November. Completed 39 IMRT sessions on August 2. At my 30-day follow up with the RO, my PSA was down to 1.66. He’s got me coming back in 6 months, but I do have an appt with my PCP in November and will likely get my next PSA check at that time. Regarding urinary issues, there was some urgency and frequency in the first few weeks following treatment. That has now pretty much subsided and I am back to normal (got up once last night). Hoping the good results continue.

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@bberger1955

Delighted your husband is making great progress after his RP. I’m scheduled for RP at Mayo Rochester in late October. Such comfort for me to read this post. I’m anxious but not scared, probably more impatient than anything else to get it done. I work out regularly, at least 2x week so my core is reasonably strong. Were there any other things your husband did the month before surgery to prepare himself? Thank you and continued good health for you both.

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74 yoa here. RLP at Mayo Jax on July 10. Two 4+4 and two 5+4 out of 12 biopsy specimens so I rated very high. PSA was 7.6 just before surgery. Two more weeks before I am completely through with any post-surgery restrictions like straddling a lawn mower, etc. I had 13 lymph nodes removed, seminal vesicles, and vas deferens in a non-nerve sparing procedure. I have my first post-surgery PSA test and surgeon consult on Oct 19. Recovery was no problem. I am approaching continence using one pad a day. I’m regular but not religious with my Kegels. Prayers for surgery and healing for you.

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@bberger1955

Delighted your husband is making great progress after his RP. I’m scheduled for RP at Mayo Rochester in late October. Such comfort for me to read this post. I’m anxious but not scared, probably more impatient than anything else to get it done. I work out regularly, at least 2x week so my core is reasonably strong. Were there any other things your husband did the month before surgery to prepare himself? Thank you and continued good health for you both.

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Preop PT to properly initiate Kegel exercises was very helpful to me.
Best wishes for a successful surgery.

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@dgd1953

My journey started with a PSA of 4.63 in November. Completed 39 IMRT sessions on August 2. At my 30-day follow up with the RO, my PSA was down to 1.66. He’s got me coming back in 6 months, but I do have an appt with my PCP in November and will likely get my next PSA check at that time. Regarding urinary issues, there was some urgency and frequency in the first few weeks following treatment. That has now pretty much subsided and I am back to normal (got up once last night). Hoping the good results continue.

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FYI PSA testing: It is helpful to use the same lab, if possible, to have consistently comparable PSA results.

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I had mine removed on Aug. 3rd. Very much pain for maybe 3 weeks but as soon as the Cath was removed, peeing in the morning, peeing in the evening, pee at supertime. Many of you are lucky. I pee 200 times a day and take a pill called Minapine. I think maybe now I am slowing some but cough bam, pee, lean back in a chair bam again, stand up and pee again, ususally I have 10 seconds to get to the toilet. I ride my bike hard for over an hour a day, do 1,000 cruches and situps a day, now do my resistance bands again too. My belly is numb esp, my belly button. Lab said all gone. CT all gone, Bone S all gone so my first blood work is Nov. 8th and if my PSA is 0, I will be very happy My PSA shot up from 4.3 in a year to 6,9 My Gleason Score was 8 after the biopsy but got downgraded to a 7 on the post surgery Lab of the prostate and some lymph nodes. I had a very hard time but as I am 70, and mostly in good humor just joke about it all and hope I can become normal soon. God Bless all of you and I hope and pray you all get well and live long lives. Dave

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@bberger1955

Delighted your husband is making great progress after his RP. I’m scheduled for RP at Mayo Rochester in late October. Such comfort for me to read this post. I’m anxious but not scared, probably more impatient than anything else to get it done. I work out regularly, at least 2x week so my core is reasonably strong. Were there any other things your husband did the month before surgery to prepare himself? Thank you and continued good health for you both.

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My husband suggests watching a YouTube on kegels and add that to your exercise routine. Doing these each day prior to surg will help. Its about 5 minutes. Research has been done on "better in, better out" in preparing for surgery.
He just kept doing all normal activities. He's usually tight lipped about health stuff but made decision to be very open with family and friends and this support provided us both invaluable support and care and helped keep the anxiety in check. That, and resting in the understanding it was not in our hands, there is a bigger plan in place. We are SO happy we went to Mayo Rochester. Definitely the A Team, without a doubt! Godspeed to you on your journey!!

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