Recurrent Prostate Cancer

[tommyrobertson]

Hello. I was initially diagnosed with prostate cancer in July 2014. Been cancer free until March 2020. My PSA began to rise. My urologist recommended radiation treatment. I am currently in the midst of my radiology treatments. Today will be number 17. I have 23 more. My PSA this time was .1.6. Nothing was detected in my PET scan. No metastasis. Has anyone had any experience with a recurrence? I’m thinking of having my testicles removed after radiation. Let me know if anyone has undergone this surgery and your prognosis. Thank you!

[Tall_Allen]

Why would you remove your testicles if the salvage treatment cures you? I doubt any doctor would perform that operation until after the results of the salvage radiation are in.

[tommyrobertson in reply to Tall_Allen]

I am waiting until after radiation treatment is completed to discuss the procedure with my doctor.

[Tall_Allen in reply to tommyrobertson]

You also have to wait until your testosterone returns to normal.

[tommyrobertson in reply to Tall_Allen]

That is not a problem for me.

[brodie69]

Wishing you the best . Prayers to you! I know how depressing this issue can be.

[tommyrobertson in reply to brodie69]

Thanks Brodie!

[billd9946]

I’m in a similar situation. Surgery in July 2015, undetectable PSA for quite awhile, now rising and currently at .31. I’m curious what your PSA reached before starting radiation... your post says .1.7. I had an Axumin scan when my PSA reached .2 and it showed nothing. Were you offered this type scan before radiation being applied to such a large area? I’m now waiting for my PSA to reach .5, which is when I’ll be able to get a PSMA scan. I’m following the advice of my oncologist on this. Have you consulted with an oncologist concerning your situation? Castration seems premature at this juncture in time, but perhaps I don’t have the full details. Did your radiologist recommend hormone therapy with radiation? I thought that was pretty much standard. I understand how you feel, believe me. Even after we make our best guess decision, there are always others who will disagree. Take it easy and make sure you’re well informed... I hear you.

[tommyrobertson in reply to billd9946]

Hey bill9946. My PSA before radiation was 0.1.6. Before radiation, I had a full body PET scan. Nothing visible from the scan. My doctor has not recommended hormone therapy yet, as I am still undergoing radiation. I will speak with him after I complete radiation. I am very comfortable with my decision to have an orchiectomy. I really have no use for my testicles. My 51 year old brother died in September 2019 of prostate cancer. It was horrible to watch his death. Anything I can do to minimize the cancer, I will do. I don't have sex now and, if I ever do again, it will be as a receptor. I've lost my sex drive for the most part anyway. My life is more important to me than sex. I will be discussing my options once my radiation is completed. Today will be number 18 for my radiation treatment. Thank you for your kind message. I appreciate any and all information I can get. Have a great weekend!

[billy1950]

Hi Tommy,

I could possibly think about having my testicles removed for some of the same reasons. However, i think either way with castration that there are side effects. How are you doing in all of this?

Billy

[tommyrobertson in reply to billy1950]

Hello Billy!

I did not have me testicles removed because my urologist told me it was unnecessary. He was right. My last PSA came back as undetectable PSA. I’m going to just go with the flow right now and take it as it comes. Good luck to you, whichever decision you make. I wish you the best. Take care of yourself Billy.

Best regards,

Tommy

[Jaffa_2001]

Hello Tommy

I was diagnosed in late 2000 and had my radical prostatectomy in April 2001. PSA was almost undetectable at 0.04 for about a year and then suddenly was at 0.09, then in 18 months stood at 0.34 at 2 years it was 0.61 by the end of 3 years it had jumped alarmingly to 1.11.

My surgeon/oncologist made the decision that I should have radiation; I refused to have the hormone treatment they recommended and insisted that I just go for the further treatment. He agreed and like you I had daily zaps for 2 months. By December 2005 my PSA had once again dropped but to only 0.16.

My PSA has never reached the levels of my post-op tests, and over the last 15 years slowly increased with my doubling time always being about 3 to 4 years. I have had scans just to make sure there are no metastases when it has jumped a bit more than usual. My last test has my PSA at 9 and it has always been stated by my consultants that they would consider ADT when it reached 10. My next PSA test is due on the 20th anniversary of my RP (April 2021).

I have no doubt that it will be at 10 or more when that test is performed and I will need to make some big decisions again. But it has taken 16 years for my PSA to reach a level when hormonal manipulation is an option.

None of us on this journey are the same and far be it from me to suggest what your next course of action should be after you complete the radiation. But having your testicles removed is a huge decision to make and I think I would be inclined to see where your PSA goes after the radiation treatment. It takes a while for your PSA to start declining after the radiation; mine took a year to reach its post-radiation nadir.

Either way I wish you all the very best Tommy. Hope my story helps, albeit a little.

Brian.

[tommyrobertson in reply to Jaffa_2001]

Brian,

Thank you for your kind words. I had my follow-up PSA test about a month and my PSA was undetectable. I go back in six months for my next follow-up. I’ve decided to just follow my Urologist’s advice and just live my life. There are never any guarantees for any of this. I’m happy with my decisions thus far. The radiation did, however, reduce the intensity of my orgasms. They were pretty good after my surgery. The radiation must have “zapped” some nerve. I’m just guessing. I will bring it up during my next visit. So far, I have not received any hormonal manipulation because it hasn’t been necessary. I just watch a lot of television and work. I’m 62 years old now. I’m hoping I will be able to retire in about 4 years. As I mentioned earlier. I live each day thankful for the time I’ve been given. My brother was not so lucky. His prostate cancer killed him at 52 years old and he left a 12 year old daughter and wife behind. I’ve never cried so hard in all my life. I told my sister that it should have been me instead of him. I would have gladly taken his place. I’m just so sad he is not going to be able to see his little girl grow up. He loved her so much. Any, I’m tearing up now and have gotten off course with my prostate cancer experience. Thank you again for your kind words. I wish you the best health. Have a good day!

Tommy

[wallygator]

I'm assuming you had surgery initially. I had surgery in 2016. I had a BCR in 2017 (some 9 months after surgery). The doctor recommended salvage radiation and I had 40 radiation treatments in early 2017 (after 6 weeks of ADT). I continued ADT for a full year. I had to ask the doctor for a year of ADT. I read several studies indicated that the long term survival was better for people that had a year of ADT. The benefit decreases after a year. I have had an undetectable PSA since them (knock on wood). I'm pretty sure no surgeon will consider removing your testicles unless you have a recurrence. Even then, they would probably prescribe ADT (the chemical equivalent of castration). If ADT fails, castration would probably also fail as the cancer has become "castration-resistant". ADT is hard enough, I would hate to think about castration, which is irreversible. Note: I am not a doctor and this information is based solely on research and personal experience.