One year past prostatectomy, in waiting mode.

I know exactly what you are saying and I too have anxiety, bordering on depression! I had my non-nerver sparing RARP on June 24th at Mayo in Phoenix. I was a Gleason 9 with 60% Intraductal Carcinoma, stage pT3a (EPE), with cribriform pattern 4 present. I had clear margins and no lymph node involvement (21 removed). During my follow-up with the surgeon, I ask about reoccurance and he said it would absolutely happen! I have my first PSA next Monday, so I just wait to see what's next, and I suppose that will be the plan every 3 months? I try hard to put it all on ignore, but it is difficult, so I spend my time searching for the best undergarment for my incontinence, doing kegals (I even dream about them), and daydreaming about the sex that I used to enjoy. Thankfully, I have a very understanding and patient wife! I think one of the worst things is the constant barrage of feedback from friends & websites preaching that Prostate Cancer is no big deal - you don't die from it, rather you die with it. Well, I suppose if those folks had to deal with high risk, highly agressive PCa , they might not feel that way!

Thank you. I agree wholeheartedly.
I am totally pleased and grateful, and hopeful for the future.
I suspect that all of ask our treating docs " what do you think or predict about recurrence " or the future course.
After completing the Salvage Treatment regime, my Rad Onc gave me a 6 yr prediction before recurrence.
And I would be very grateful for 6 quiet years, and am trying to embrace this possibility.
In my more positive moments, I imagine that the RT so soon after RP and with a lowish PSA burden of .19, effectively carpet bombed the rogue microstatic G 9 cells, and that I will never hear from then again.
And then the other me chimes in that statistically, the G 9 w/ EPE is coming back.
And the positive me argues that the treatment regimes are better, the PCa was caught sooner and the stats are dated.
Then the negative me replies " yeah, right".
And so on back and forth.
However to repeat clearly, I am thrilled with my treatment results of surgery and follow up radiation w/ short term ADT.
And I wish excellent and long lasting good treatment response for all of us.

Thank you. Agree totally.
And I have been inspired by others on this forum to embrace the gratitude.
When I go to bed, I review the day in my mind, find something or things that made me happy or went well, and say to myself "today was a good day. And tomorrow will be another good day ".
Try to live each day in peace and love, with foregiveness and happiness.
Best to us all.

I have a real problem with their .01. For years, I have been hearing people come into the Ancan.org weekly meetings and asking if they should do something about their PSA. I don’t think I’ve heard of one person that had .01. They complain about their .02 going up to .03 or their .03 going up .05. Dozens of people who have less than .1 worrying about it going up and down a little bit over many months.

It seems like .01 is an unrealistic target, but I guess they can use it as their standard, but I bet almost no one meets it.

When you get genetically tested, they see if you’ve got any of the known genetic faults. BRCA2 is the most common. It prevents your DNA from correcting cellular mistakes, As a result, there are a number of cancers people with BRCA2 have to contend with. My grandfather died from pancreatic cancer in his 40’s.. Two of my aunts had breast cancer, one of them died from it. One of my cousins died from breast cancer at 60. All of these are common with people with BRCA2. it’s an abbreviation for breast cancer, which was the most common problem but prostate cancer is also a very common problem with people that have BRCA2. They also tend to have cancer younger.

You should be getting genetic testing, there are about 30 different genetic problems they look for. You can get genetic testing for free here, just make sure you don’t check the box you want your doctor involved or they won’t send you the spit tube you need to return until your doctor talks to them.

Www. Prostatecancerpromise.org.

Jeff, I respectfully disagree. Outside of this forum, I am active in the prostate cancer support community in the Chicago metropolitan area. I personally know at least a half dozen men whose PSA has been less than 0.01 for years after receiving primary therapy, primarily RALP. One friend of mine was getting his PSA checked every six months and now has a PSA of 0.025 with a prior reading of 0.01. His medical oncologist is now decreasing the interval of his PSA test to monthly so they can monitor what the doubling time is. I’m sure you know that a doubling time of less than six months indicates aggressive disease.

I interviewed one of the top oncologists in Chicago and he explained that while the NCCN standard is 0.1 ng/mL, he and other leading doctors use ultra sensitive PSA like a barometer that indicates a forthcoming change well before a storm shows up on radar or in the case of PCa, an MRI or pet scan. Makes sense to me.

Good luck on your journey.

Bob

I get as anxious about PC as anybody. I’ll embrace each day, pray I stay cancer free, and deal with any bumps in the road if I encounter them. BTW, rehabbing my total knee replacement is no walk in the park. I’ve learned to take theses things head on. 👍

Had my left knee replaced in March and it turns out my muscles were totally deteriorated from seven years of ADT. It is taking me six months of building up my muscles with physical therapy, to be able to walk without much of a limp. Had my right knee done five years ago, and I recovered in a couple of months. ADT for a long time can be real detrimental.

I’m walking a mile twice a day and going to the gym three times a week to try to rebuild my muscles and beat the fatigue.

I had my hip replaced last October and recovered within a couple of months, a lot easier surgery to recover from.

I participate in the advanced prostate cancer groups, everyone has metastasis or reoccurrence. I guess that makes a difference. If I was participating in the low/intermediate group I would probably see what you’re saying.

Keep the faith! It’s tough getting old.