Struggling to find perspective

DerangedMNKY43

Otherwise healthy 44 year old, non smoker, no meds for BP, cholesterol, etc. Taking no medications for any conditions really. My journey so far:

2018 PSA 3.0

April 2021 PSA 5.39

Round of Cipro for possible infection

June 2021 PSA 6.79

Referred to urologist, DRE revealed no lumps

Aug 2021 Referred for MRI – 2 lesions, PIRAD 4 and 5, vol 18g

Oct 2021 – biopsy - Gleason 3+4, 4 of 13 biopsies, t2b

Presented with options of surgery, seeds, radiation, cryo, etc.

Met with surgeon, met with radiologist, read Dr. Walsh’s book, etc.

Struggled with deciding on treatment options, but due to my age I elected surgery which hopefully leaves other treatment options available in the future if needed

Jan 2022 – PSA 11.59

Feb 2022 – RP surgery

Recovery week of surgery was one of the hardest of my life, catheter discomfort, medication side effects, abdominal pain, etc. But I got through it. I am now about 10 days out from surgery. No incontinence, mild ED if any. Can’t stand or sit for very long without abdomen getting tired and achy, but getting better each day.

Post surgery pathology -  gleason 4+4, t3a N0 Mx, approx. 3mm positive margins at the bladder neck and left posterior, extraprostatic extension not identified, bladder neck intrusion present left and right, lymph and seminal vesicles clear.

Not the final results I was expecting to hear. I have spent the last few days reading medical reports, blogs, study outcomes based on t3a diagnosis, etc. 

What I have found is every case is different and unique. Recurrence, while it can be averaged based on different diagnosis, is not a guarantee.  After my final pathology, I fear that I have a high chance of recurrence, however.

What I think I struggle with most is the survival rates. Do a web search for prostate cancer survival stats and the prognosis looks good for most at 5, 10, 15, and 20 years. That’s great for someone at the average age of diagnosis of 68. I’m 44………….

20 years only puts me at 64. I don’t find much data discussing the survival rates for those of us under 50. It’s a small and distinguished group, I get it. But it really messes with my head. Are there cases of people remaining disease free for 30-40 years? With recurrence and without? Many questions linger and consume my thoughts.

I suppose nothing at this point matters other than the PSA test at 3 months, and the one after that, and the one after that………….

For now I wait and try to stay busy. The unknown and waiting is the hardest.

I am struggling to remain positive.

I am struggling to not overthink the future and things that have not happened yet.

I am struggling to find perspective.

Rob.Ski

I'm 51 and am scheduled for surgery next week. I'm focused on the near term, getting through surgery and its side effects. Then I'll be on the PSA watch like you. We know its in our best interest to stay positive but, that is not as easily accomplished for everyone. Life is what you make it, so live your best while you can.

lighterwood67

I am 71; RP March 2018. PSA undetectable; continent; intimate with wife (if I can catch her, she is awfully fast). Just looking at what you said, Your surgery was just this month. There is a physical side, a healing, so to speak, that will take some time to recover. You appeared to have dodged the major side effects that folks have to deal with (incontinence, ED). In my opinion, you are doing the right things to find "perspective". Research. I think it is our nature to wonder where will I be in twenty years from now. Personally, I would be thinking that if even I did not have prostate cancer. I do not allow this cancer to drive my quality of life. For example, my wife and I camp a lot. After, my prostate cancer surgery, we got back to camping. I had not regained full control of my bladder at the time. In other words, I was wearing my depends and filling them up, but I was out there doing what I wanted to do with my wife and dog. Hence, my perspective. Keep Quality of Life in front of you. The years will pass. Good luck on your journey.

centralPA

My FIL had prostate cancer at about your age, had his prostate removed, and lived another 40-some years until another malady caught up to him. I don't know the details but this was back in the early 80s, so it must have been discovered from a DRE, which means things were getting lumpy.

This was before nerve-preserving surgery. He was always telling me to make sure I got my prostate checked. Now I understand why.

To expand on the "long ago" point, even if the future holds a second battle for you, it will likely be "far ahead", and the progress in prostate cancer treatment continues to accelerate. There will probably micro-cancer hunting robots let loose into your innards by that time, guided by AI-running supercomputers. I kid you not.

Best of luck @DerangedMNKY43

Clevelandguy

Hi,

So far it sounds like your doing great. 10 days out means you just had your catheter pulled which is remarkable, you should continue to heal over the coming months. It took me months to years to get to your point. I had surgery back in 2014, 3+4, plural neural invasion and so far have been cancer free. Only time will tell if your cancer is gone by followup PSA testing over the coming years. From what you have described it sound like your chances for a complete recovery is really good. I would not let your Prostate cancer slow you down, go out live life and enjoy. Enjoy life….

Dave 3-4

VascodaGama

Gleason 4+4, pT3a pN0 (Mx)

Surely it isn't relaxing getting such pathologist's findings on the specimen, however the report describes "extraprostatic extension not identified" which is a favorable result. The other indications regarding the "positive margins and bladder neck intrusion" are common findings in surgeries as tissues at the incision retreat after being cut. The extent of the intrusion could be zero but just for the fact of finding it, the pathologist is obliged in reporting pT3a.

Other favorable findings are "lymph and seminal vesicles clear". There is no mention on nerve bundles' invasion which in Gleason score 8 would be a critical comment, therefore, safe and favorable. The term "bladder neck" in prostate specimen refers to the area close to the bladder at the base region of the prostate. It is not a part of the bladder.

Your next step is what you say; ... being vigilant with ultra sensitive PSA tests (0.XX ng/ml) at three months intervals.

The future is unknown but that is not a reason for thinking negatively. You should now concentrate in recovery, particularly the issues regarding ED. You need to be active avoiding penis atrophy. I recommend you constants massages, musturbation and the use of a pump or Sildenafil (viagra), to get the blood into the cavernous area for oxygenation.

Best wishes and luck in your journey.

VGama

DerangedMNKY43

https://csn.cancer.org/discussion/comment/1693469#Comment_1693469

Thank you for taking the time to comment. Best of luck on your surgery, recovery will be challenge but you will get through it. You are right, focusing on the near term is important right now. However, when all you can do is lay in bed and watch TV your mind wanders. Each day is getting better and the research and participation in groups like this is helpful.

DerangedMNKY43

https://csn.cancer.org/discussion/comment/1693485#Comment_1693485

Thank you for the comments. As the recovery days pass I am grateful that at this stage that it could be worse and so far I am fairing as good as can be. I continue to try and remain in the present and focus on today and now, not tomorrow and what could be.

DerangedMNKY43

https://csn.cancer.org/discussion/comment/1693488#Comment_1693488

Thank you for taking the time to comment. This is an encouraging story. All cases are unique and different. I constantly have to remind myself that even with a recurrence there are treatment options and time on my side.

DerangedMNKY43

https://csn.cancer.org/discussion/comment/1693495#Comment_1693495

Thank you for your comments. I do feel like I am doing really well all things considered. The more I get mobile as recovery progresses the more I can focus on getting busy and back to life.

DerangedMNKY43

https://csn.cancer.org/discussion/comment/1693509#Comment_1693509

Thank you for taking the time to comment. What I have found through extensive readings is every case is unique and nothing is predetermined for the future. For every favorable result I find based on my final diagnosis, I find something else unfavorable. However, none point to a guaranteed outcome at any specific time period in the future. This is where on can analysis paralysis of the final diagnosis. As stated all I can do at this point is wait on PSA results and see where they go. If they point to a recurrence then deal with it as it comes. I did accidentally leave out that perineural invasion was present. From what I have read this is an unfavorable condition that can indicate a higher risk of recurrence and distant metastasis.

Finally, while I don't have much leakage, I do have a weak stream when I urinate, but do end up mostly emptying my bladder without straining. Almost like my bladder isn't pushing the way it used to. It is just a little concerning as I am worried about a stricture.

Thanks again for the insight and information.