Many years since radical prostectomy: PSA values rising

@heavyphil
I went in at 7 AM yesterday for the procedure. It was started at 9 AM and by 1230. I was heading home. The nurse in recovery said I woke up quicker than most people.

I have some pain from it, but I’ve been taking Tylenol since the first time I took one 5mg oxycodin yesterday afternoon. Slept pretty good last night, though I did have to get up to pee, which I don’t normally have to do. That is difficult, a little painful. This morning, I’m not feeling bad at all. Biggest problem is sitting down. They open you up in the perinium and stomach. The 2” stomach opening doesn’t bother me at all, The perinium opening makes it really hard to sit down without it hurting and burning, But it’s not very painful laying down. I may have a high threshold for pain, I don’t know how to compare it to other people.

The doctor running the ancan.org Speaking freely Meeting last night was impressed that I wasn’t in more pain. He said when he was done, he felt like he had razor blades in his body that were just cutting him up. The pain went on for weeks. I know the doctor I had do it was real experienced at it. My oncologist said she was a real artist. My results seem to be among the better results I’ve heard from people..

@heavyphil
I went in at 7 AM yesterday for the procedure. It was started at 9 AM and by 1230. I was heading home. The nurse in recovery said I woke up quicker than most people.

I have some pain from it, but I’ve been taking Tylenol since the first time I took one 5mg oxycodin yesterday afternoon. Slept pretty good last night, though I did have to get up to pee, which I don’t normally have to do. That is difficult, a little painful. This morning, I’m not feeling bad at all. Biggest problem is sitting down. They open you up in the perinium and stomach. The 2” stomach opening doesn’t bother me at all, The perinium opening makes it really hard to sit down without it hurting and burning, But it’s not very painful laying down. I may have a high threshold for pain, I don’t know how to compare it to other people.

The doctor running the ancan.org Speaking freely Meeting last night was impressed that I wasn’t in more pain. He said when he was done, he felt like he had razor blades in his body that were just cutting him up. The pain went on for weeks. I know the doctor I had do it was real experienced at it. My oncologist said she was a real artist. My results seem to be among the better results I’ve heard from people..

@jeffmarc Well, we all know that you are one tough SOB, so I am sure I would be in the same category of the doctor in terrible pain.😩
Did not realize they go thru the perineum - that is one very sensitive area.
Do you urinate normally when your bladder signals the urge or is there something you have to activate? Whatever happens has got to be an improvement over that Wizzy clamp thing you were using…wishing you a very speedy recovery!!
Phil

@fag
The problem is, Prostate cancer tends to go to the bone. It then become becomes quite painful. You Don’t want to be in that position.

My father died of prostate cancer at 88. I remember when he told me Lupron stopped working, but I didn’t know what it really meant at the time. There was no other solution. He had his teeth ground down and crowned without Novacaine When I was a teenager. He came home at night after he had it done and ate dinner with us. An incredible pain tolerance. In the last few weeks before he died, he was on so much morphine he couldn’t communicate. The pain was just that severe.

There are options, Do you really want your last year to go like that?.

I had a local recurrence last year, ten years after a prostatectomy (age 72 at time of recurrence). I did 38 sessions of IMRT without ADT. My PSA going into radiation was 0.1 and six months later it is still 0.1. My recurrence was first detected as a small nodule in my prostate bed, and a PSMA PET scan showed the nodule to be highly active.

Some thoughts regarding your situation:

- before considering ADT, get your testosterone tested. Testosterone tends to drop with age.

- if you do IMRT, hit the pelvic lymph nodes as well as the prostate bed. Research studies have shown that this yields better outcomes.

- IMRT alone can cause pronounced fatigue (resolves a few weeks after therapy). Adding ADT can turn that into extreme fatigue. Vigorous exercise can help with the ADT induced fatigue. I don’t know what your physical condition is, but I would have a serious conversation with your docs about the impact on your quality of life from the treatments. On the flip side, the side effects of ADT often diminish with age, mostly because testoterone is lower. Only you can decide if it either of the therapies are worth it or not.

- oncologists especially can get focused on curing disease over treating patients. If you have a trusted PCP, perhaps have a frank and open discussion conversation with him/her about your treatment options and quality of life. They tend to have a more patient centered view.

- get a second opinion. I actually got opinions from three oncologists before initiating radiation therapy.

- folks often focus on the immediate side effects of ADT like hot flashes, fatty weight gain, breast enlargement, penis shrinkage, etc. But there are also metabolic side effects such as increased risk of cardiovascular disease (including death from stroke and/or heart attack) and cognitive decline. Gather information on these risks relative to your health and medical conditions before finalizing any decisions. Many folks here are as knowledgeable as your docs, and often are more forthcoming.

- not all hormone therapies (ADT and ARPI drugs) are created equal in terms of side effects. As Jeff noted, Nubeqa (darolutamide, ARPI in pill form) is often well tolerated. In contrast, Lupron (leuprolide, ADT given as an injection) often has some brutal side effects. Learn everything you can about hormone therapies before agreeing to any doctor’s recommendation. Again, the brain trust in this group can really help you with that.

- radiation therapy will require “full bladder and empty rectum” to be most effective and to mitigate radiating healthy tissues. This can be achieved by proper dietary adjustments but it can be a daily stressor during treatment as well. Best to make necessary dietary adjustments at least a couple weeks before initiating radiation therapy. As with hormone therapy, get well informed about what to expect before starting treatment.

- the fact that 25 years have passed until your PSA rose above detection is in your favor (suggests non-aggressive cancer), but on the other hand, a PSA of 5.2 is concerning. For post-prostatecomy men, a PSA of 0.2 is usually considered evidence of a biochemical recurrence.

Best wishes with however you decide to go,
Mel

Hi,
If it was me at 87 yrs old I would just do the radiation and forget the ADT or take a daily ADT drug Orgovyx and if you start having side effects stop the drug. At 87 yrs young quality of life should mean something.
Dave 3+4
ps: hope I can live til 87……