In December 2017 I was diagnosed with prostate cancer after a biopsy. I ignored the symptoms for many years and it cost me. In February 2018 I had surgery to remove my prostate hoping that would cure me, PSA never went to 0. By December 2019 I was alarmed enough to start ADT with Elegard and in February 2020 I started radiation therapy for 8 weeks. My PSA finally went down to 0.008 and remained there until now. My PSA is 0.19, a significant rise it seems to me. Not sure what comes next, at this point. The permanent side effects that I live with now are permanent and complete impotence, a penis that has become tiny and useless and I became so incontinent that I had to have another surgery to place an artificial urinary sphincter just make it manageable with pads. Looking back, I wish I had handled things very differently.
Rising PSA...again..: In December 201... - Advanced Prostate...
Rising PSA...again..
What were the dimensions of your salvage radiation? Did it include the entire pelvic lymph node area?
Yes, it did. The pathology at the time of my surgery showed that the cancer had migrated to only one seminal vesicle and the lymph nodes were clear. I've had numerous scans including an Axumin study that were all negative. The doctors figured the cancer was microscopic and localized in and around the prostate bed because none of the scans found anything.
I'm confused by your reply.
me: "Did it include the entire pelvic lymph node area?"
you: "Yes, it did. "
then, you: "The doctors figured the cancer was microscopic and localized in and around the prostate bed because none of the scans found anything"
So did you or did you not have radiation to the entire pelvic lymph node area, or was the radiation confined to the prostate bed?
The radiation was of the entire pelvic area. The front, both sides and my back as well.
That still does not answer my question. Was the radiation to the entire pelvic lymph node area? In other words, did it extend as high as the common iliac lymph nodes?
Sorry, I guess I don't know. What I do know is that when I discussed the salvage radiation with my doctor I asked about Proton Beam radiation. He told me that since we can't pinpoint the cancer with scans or MRI I need the entire pelvic area needs to be treated. So, your guess is as good as mine. I just know that I was placed on the machine and it revolved around me. Supposedly, the dimensions were insufficient.
Let me explain. (It would help me answer if you would provide the details of your post-RP PSA and path report in your profile). Prostate cancer typically spreads from the prostate to the prostate bed to the pelvic lymph nodes or bones. If there are no risk factors in your path report and your PSA is low, salvage radiation is usually just to the prostate bed. But if PSA continues to climb, there is a second opportunity for curative radiation if the entire pelvic lymph node area is irradiated. This should be discussed with your radiation oncologist.
Thank you for the information. I have a Tele conference with my urologist next week. I guess I'd better get in touch with the radiation oncologist too...until I read what you wrote, I didn't think there was anything else they could do. I sure hope I won't need hormone therapy too, it was torture for me.
Your urologist won't know. Make sure your RO treats a wide enough area:
prostatecancer.news/2021/05...
Two years of ADT with it is probably a good idea.
Ok, thank you.
Hello again. PSA is still rising from 0.19 in May to 0.33 now. RO that treated me in 2020 hasn’t returned my calls. Perhaps I should look into switching providers. My phone consultation with the urologist in August was unproductive. He said to go have fun and we’ll test you again next summer. He also said that I have castrate resistant advanced prostate cancer. If PSA is high enough by then maybe a PET Scan will show it’s location so it can be targeted. Your referring to curative radiation sounds promising, but I’m not sure where to turn.
Are you taking ADT? Please fill in your profile.
Not at this time. It was torture for me.
Just an aside, for what it's worth -- proton therapy, like any other radiation therapy, can be set up to cover the whole pelvic region. I recently completed proton therapy, with 28 sessions to the whole pelvic area, followed by 16 sessions focused on the prostate only (they called it "prostate boost").
Is the incontinence due to the surgery,or the radiation. That should influence a decision whether you want another round of EBRT.
Thank you for your input.
It doesn’t matter. He already has an artificial urinary sphincter.
So sorry to read your story. Surgery and its outcomes can be so brutal. Radiation was our choice and so far so good. Sending hope for great advice from your Oncologist and your cancer centre team.
My cancer came back as well, which prompted me have a PSMA PET Scan. This showed the cancer had traveled to my pelvic lymph nodes. The Oncologist teams at MD Anderson provided the scan to my radiation Oncologist which was used to guide CyberKnife radiation. Lupron and Zytiga and now I'm back to .00. Perhaps you should discuss having a PSMA Pet Scan with your medical oncologist.
Re: I wish I had handled things very differently.
Don’t beat yourself up. I think everyone here isn’t perfect we try our best.
Would’ve could’ve should’ve
We all do the best we can.
I agree we do what we know. Sometimes not enough knowledge.
I only apply "would’ve could’ve should’ve" to marrying my ex-wife......To the rest I say suck it up John you're 86 years old and it's too late to consider a Penis Reduction..............
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 05/05/2023 10:34 PM DST
I second what anonymoose2 said. You did the best you could based on your knowledge at the time.
...thanks for your honesty; too often we dont share what has happened to us and you never know how it may help someone coming along behind us. Its really hard when we look back and see how many chances we had to act and we did not...I have posted my sad list of regrets as you have started to do (check out my site), just to let other men know what not to do and how not to proceed...but in the end we cannot change the past and must look forward. I hope your path will not be too difficult...
For PSA the doubling time is more important than the PSA level...its hard to tell from your text what this could be. Here is a good podcast that talks about how important that PSADT is...hope this helps. Keep faith that you will live with this disease and not succumb to it...that is our hope and focus...Rick
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