Living with Prostate Cancer: Meet others & introduce yourself

After being diagnosed w 4+3=7 w pelvic LN mets (2/2022 ) in Prescott and realizing the Docs were making less than optimal efforts I went to Mayo Phoenix. Treatment has been stellar.

Greetings! My name is Dennis and I am 69 years old. I have been lurking here for a few weeks and decided it was time to introduce myself and tell my story.

In early November, I had a routine visit with my PCP’s office and the attending NP mentioned my PSA (4.63) had been steadily increasing and she recommended that I see a urologist. I was fortunate to be able to get an appointment the following week at which time arrangements were made for an MRI and biopsy. The MRI was clean, but the biopsy returned two of twelve cores with no more than 30% cancer (Gleason 3 + 4). The pathologist subsequently sent off a sample for Decipher testing. Meanwhile the urologist and I discussed treatment options and we both agreed that “active surveillance” seemed appropriate. The doc also sent me for a PSMA PET CT scan which showed the cancer was confined to the prostate. So far, so good.

Unfortunately the Decipher results then came back as high risk (0.84), so the “active surveillance” option was no longer on the table. My urologist and I discussed the pros and (significant) cons of surgery, radiation, and hormone therapy. He offered an opportunity to separately meet with a surgeon and RO to get more information., but I had already done some homework and felt that the radiation route would be best for me. I asked the urologist if the radiation treatment would be accompanied by hormone therapy and he replied that it would and he would be giving me injections every few months.

The next stop was a visit with the RO. He and his nurse spent a full 2 hours with me getting my background, discussing the process and side effects, and giving me a quick physical exam. The most interesting part of this discussion was that the RO was adamant that radiation (IMRT) would cure me without the need for hormone therapy. I reminded him of the high Decipher score, but he did not waver. His opinion was basically that “the cure was worse than the disease.” The hormone therapy would offer marginal benefit, but subject me to the well documented side effects. In short, over treatment.

So that’s where I am now. I go back to the urologist on March 9 to further discuss this with him and set up a time for the spaceoar insertion. My wife and I had previously made plans to travel for 3 weeks in April/May, so the treatment won’t begin until we return.

That’s my story and I’m sticking to it….at least for now. Thanks for reading and feel free to chime in with your opinions and thoughts.

Nov 18, 2022 I had robotic RP and the surgeon spared the nerves on one side. Pathology reported clean margins and lymphs were negative. Pre surgery PET detected cancer cells only in the prostate and encapsulated.

Post surgery the surgeon reported cancer was encapsulated in the prostate.

Just prior to surgery PSA had risen to 10 and after biopsy Gleason of 8.

I just had my first post RP PSA and it came back 0.03 and I find this worrisome. My worry is made worse because I allowed myself to believe, foolishly, it would be 0.00. I see the surgeon tomorrow after pelvic PT (3rd appt).

My PSA started to rise over 10 years ago was being monitored and in 2014 a biopsy was done after it reached 4.5 but found nothing. Then 5 years ago it jumped to 8, fell to 6, then 5.4 then back 6.4, then down etc. Then 10 in July 2022. The decade + anxiety with up and down PSA's has been pretty bad experience with tests every 3 - 6 months. I know, preaching to the choir....

Now at 0.03, and panicky, I hope the surgeon has something to relieve some of anxiety.

I've been left with bad incontinence and ED, topics for another time.

I'm 73 and retired in MN. I'm glad this forum exists and until this morning I have not had anyone to share info with others coping.

Thank you

Basically Pro and Cons, I am candidate. I continue to read and still question which is better, Surgery or HIFU? However, as of this week I committed to HIFU, and I am now researching to find the most experienced HIFU doctor in the country. Call it a second and third opinion from docs that provide this treatment. Thank you for the article. I will continue to share any new information

Our story. Gleason 8, stage T3b, seminal vesticle invasion. Mayo Rochester surgeon said Surgery and radiation will result in equal recurrence chance...90%. Why risk surgery and high chance on incontinence with surgery, when radiation treatment will result in the same chance of recurrence.
So we opted for ADT, Zytiga, and radiation. Radiation oncologist concurred, so that's our treatment choice. All choices suck, but we listened to the experts....really trust Mayo, they are the best! One month in minor side effects from ADT and Zytiga, but its early. Radiation starts mid March....hoping for the best!

Greetings! My name is Dennis and I am 69 years old. I have been lurking here for a few weeks and decided it was time to introduce myself and tell my story.

In early November, I had a routine visit with my PCP’s office and the attending NP mentioned my PSA (4.63) had been steadily increasing and she recommended that I see a urologist. I was fortunate to be able to get an appointment the following week at which time arrangements were made for an MRI and biopsy. The MRI was clean, but the biopsy returned two of twelve cores with no more than 30% cancer (Gleason 3 + 4). The pathologist subsequently sent off a sample for Decipher testing. Meanwhile the urologist and I discussed treatment options and we both agreed that “active surveillance” seemed appropriate. The doc also sent me for a PSMA PET CT scan which showed the cancer was confined to the prostate. So far, so good.

Unfortunately the Decipher results then came back as high risk (0.84), so the “active surveillance” option was no longer on the table. My urologist and I discussed the pros and (significant) cons of surgery, radiation, and hormone therapy. He offered an opportunity to separately meet with a surgeon and RO to get more information., but I had already done some homework and felt that the radiation route would be best for me. I asked the urologist if the radiation treatment would be accompanied by hormone therapy and he replied that it would and he would be giving me injections every few months.

The next stop was a visit with the RO. He and his nurse spent a full 2 hours with me getting my background, discussing the process and side effects, and giving me a quick physical exam. The most interesting part of this discussion was that the RO was adamant that radiation (IMRT) would cure me without the need for hormone therapy. I reminded him of the high Decipher score, but he did not waver. His opinion was basically that “the cure was worse than the disease.” The hormone therapy would offer marginal benefit, but subject me to the well documented side effects. In short, over treatment.

So that’s where I am now. I go back to the urologist on March 9 to further discuss this with him and set up a time for the spaceoar insertion. My wife and I had previously made plans to travel for 3 weeks in April/May, so the treatment won’t begin until we return.

That’s my story and I’m sticking to it….at least for now. Thanks for reading and feel free to chime in with your opinions and thoughts.