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Posted 12/5/2021 10:54 PM (GMT 0)
My dad is on his third recurrence with PC. Findings of PSMA PET scan are in my signature. He’s scared but puts on a strong front. I know he thinks this cancer is going to take his life. He’s worried hormone therapy won’t work. His prostate bed was apparently radiation resistant so I think he’s worried that hormone therapy will be as well. Any advice here would be greatly appreciated. I know we have to stay positive and upbeat. Has anyone else been in a similar situation?
Will hormones stop the growth and shrink things? Doctors say he will likely end up passing from something else. We’ve tried to stay on top of this so it’s disappointing that we are here again for the third time. I feel very needy right now and need help with thinking this through and getting a grip.
Posted 12/5/2021 11:26 PM (GMT 0)
It looks like he responded previously with Lupron so he can start that again with Abiraterone. That combo stopped my G9 mets and a lot of others here too. If his Docs say he's going to die of something else, believe them. Of course there is nothing wrong with getting a 2nd opinion too.
Posted 12/5/2021 11:36 PM (GMT 0)
Yes, he took the Lupron (I believe a month dose to try then a 6 month dose) in 2018. I’m assuming that is likely what lowered the PSA then if he was radiation resistant….
I should add that my dad is a half empty not half full type of guy. He’s saying things like IF the hormones work or they are SUPPOSED to stop the cancer and shrink it. As a supporter and person who loves him dearly I hate hearing him say those things. I’m stressed out enough (as I know he is too) that this is back for a 3rd time. The doctors (urologist and radiation oncologist) indeed think this will work. The RO is the one who said something else will likely cause his death and that he should have many years left even with the return of the PC again. He said there are 3 levels of hormones before they’d think of adding chemo. The urologist wants to do a bladder scope just to be sure he’s good there (even tho the scan showed no organ involvement since the prostate bed is at the base of bladder. The peri-rectal wall no one is sure of because it just shows suspicious uptake and is so close to prostate bed. Clean colonoscopy in July 2020 as well. A medical oncologist is being added to the mix to make sure the plan for hormones is good.
I feel like a blubbering, begging fool, but I just need some reassurance I guess from others who are in dads situation. I wish he was savvy enough to be on this forum so he can see so many positive stories.
Posted 12/6/2021 12:45 AM (GMT 0)
Lupron is highly effective on mets and that pretty much means that it works on radiation-resistant cancer since we're talking about guys that have had their cancer spread. And as GoBucks said, Lupron can also be combined with Abiraterone. I don't blame you one bit for your level of concern, but I think your dad is highly likely to have quick success with ADT.
Posted 12/6/2021 12:56 AM (GMT 0)
Thank you so much. You guys and your knowledge and responses are truly a blessing! The urologist said that dad was a bit rare that the radiation resistance only happens in about 1 out of 100 so I think that kind of made dad think he might be out of luck, so to speak, with other treatments.
Posted 12/6/2021 3:46 AM (GMT 0)

Hello, NMCKINLEY ---

We've all been in the emotional roller coaster ... so we understand where you and your dad are right now.

Reading through your post --- your dad's medical team are stating they have confidence in the next treatment step. Take heart!

They suggested there's THREE levels of treatments before chemotherapy would even be considered. Again, take a measure of comfort in that!

Forge ahead --- one day at a time. I have had setbacks, along the way --- and my medical team has been there, every step of the way.

Give that new treatment approach a chance to work. From there, a little bit of GOOD NEWS will encourage you and your dad, beyond all words!

Trust in your medical team! I can tell from what your dad's team is stating --- they are showing you many options and open DOORS, in terms of treatment possibilities. You and your dad are NOT backed up against a brick wall, at all!

Focus on how a new treatment has a tremendous possibility to help your father, going forward!

Supportive encouragement, sent your way ----

CYCLONE - # Iowa State University
Posted 12/6/2021 3:55 AM (GMT 0)
All valid and great points! Sometimes it’s hard to see the positive when you are in the middle of it all. You are so right! It’s definitely a roller coaster! I do remember the urologist saying, too, that dads PSA when diagnosed in 2012 was only around 4 so some if this is unusual (along with the radiation resistance). I guess he’s saying that the severity, or recurrences are unusual with for dads situation. I know the urologist means well and just doesn’t sugar coat things. He is a phenomenal doctor but sometimes you just want by hear that you’re gonna be ok! We’ve got this. He gets his Lupron shot tomorrow and Xgeva shot on Tuesday. I believe that is all they are starting him on at this time. I’m not familiar with Abiraterone and haven’t heard the doctors mention it. Those of you who have taken the time, tonight, to respond have sincerely done a lot for my emotional wellness. It’s easy to get down in the dumps with this. If there are more of you with words of advice please comment here. Much appreciated and maybe someone else who is feeling like me will read your words as well. Much love!
Posted 12/6/2021 4:13 AM (GMT 0)

A mantra that has gotten me through the "tough days" ---

"I'm not going to promise you it's going to always be easy, but I CAN promise you it's going to be WORTH IT!"

I saw a t-shirt logo this past year that says it all:

# BELIEVE IN THE FIGHT !

Here's to the fight, and one's FIGHTING SPIRIT!

CYCLONE - # Iowa State University
Posted 12/6/2021 5:11 AM (GMT 0)
Being an “outlier case” can make one feel alone in and of itself. You can feel as if, “If these unexpected, rare events can happen to me and no one else, what’s to keep me from having a much worse outcome than anyone else expects?”

A speed bump does not mean the road ahead will have them as well. There’s every reason to believe the ADT will work as well on him as anyone.

As has been said…what your father is feeling is normal, even if not necessarily based in reality.

Post Edited (island time) : 12/5/2021 11:32:42 PM (GMT-7)

Posted 12/6/2021 12:53 PM (GMT 0)
Island time….you nailed it! That is exactly how we’re feeling right now.
Every one of you has helped me tho and I will share with my dad! I’ll likely post again after his bladder scope and meeting with MO.
Posted 12/6/2021 1:24 PM (GMT 0)

As well, we invite your dad to become a reader here ---- and to post, if he ever wishes to do so!

We have readers here, from all over the globe!

Stay in touch with us here ~~~
CYCLONE --- # Iowa State University
Posted 12/6/2021 1:26 PM (GMT 0)
Abiraterone is known as Zytiga. It works similar to Xtandi. Both are blockades.
Posted 12/7/2021 9:39 PM (GMT 0)
I'm a half glass full kind of person, but there were times when I was processing the situation I was facing that I must have seemed very negative to my wife. When your father talks about how the hormone therapy MIGHT work, he's actually being realistic. There's a chance it won't, and it's important to face that unpleasant fact. At the same time it does not help to dwell excessively on it. After all, it might work and your father could have years of good life ahead of him. I suggest that when you dad says something negative, don't disagree with him or insist that he adopt a sunnier attitude. Hear him out and acknowledge that cancer sucks. Then try to move on to a happier topic. Of course you may already be doing that. Once I was down in the dumps and talking about what would happen if the cancer came back after salvage radiation. My wife basically denied everything I was saying and it left me feeling alone.
Posted 12/7/2021 9:47 PM (GMT 0)
Yes, it’s true that the hormones might not work but I guess it was my understanding that they likely would and if they didn’t then there were other meds he could take, or levels of hormones? I definitely don’t want to live in la la land but I know having a positive attitude/mentality can do wonders. I sure hope the Lupron takes care of it for quite a while. I hope and pray with all my heart.
Posted 12/7/2021 10:18 PM (GMT 0)
Fiddlecanoe
I do appreciate your honesty! I didn’t want to come off as not appreciating what you said.
Posted 12/9/2021 2:26 AM (GMT 0)
Dad had his Lupron shot yesterday and X-geva shot today. Praying for great results! Prayers and good vibes appreciated! Urologist sending his information to medical oncologist tomorrow so should have an appointment there soon to make sure they are in agreement with the plan.
Posted 12/9/2021 12:52 PM (GMT 0)

Sending positive thoughts to you and your dad, for sure!

Good vibes, positive ju-ju, & high hopes for new treatment success!

With my best,
CYCLONE - # Iowa State University
Posted 12/9/2021 8:46 PM (GMT 0)
I think that will put the brakes on what's going on with your dad. When is the next PSA? Or given that his PSA hasn't been that high, what is the next step to check on how he's doing?
Posted 12/9/2021 9:09 PM (GMT 0)
We sure hope it puts the brakes on! He just had his PSA last Wednesday and it had gone up to .4. It was .3 the end of September. I believe they said they will check it quarterly. I’m not real sure how long it will take the Lupron to lower the PSA.
It’s hard researching things because some sites say hormones only work 18-24 months but on here many men take it for many years with success. I know I need to make sure that I’m reading legitimate sites though.
Posted 12/9/2021 9:14 PM (GMT 0)
I was dx in '09. I failed RP and SRT very quickly with a PSADT of 6 weeks. Next was Lupron. It put the brakes on big time. PSA went from almost 20 to undetectable. So good that after a year I got an HT vacation for over a year. PSA back up, Lupron, PSA reverses and I got an HT vacation. I think this repeated once more. Then I did assorted scans as PSA accelerated. Twice found PC in illeal lymph nodes. Wiped out with SBRT.

My point: HT worked every time...and quickly. Hopefully your story will be the same.

Note: I also was put on daily 50 mg Casodex with the HT. Ask your new MO about it.

Mel
Posted 12/9/2021 11:28 PM (GMT 0)
Thank you so much! I hope so!
Posted 2/21/2022 9:08 PM (GMT 0)
Hi everyone! Sorry for the delay on update. So, Dad started on the Lupron and Xgeva and so far his PSA went from .4 to less than .1 so that is great news! It was .4 on Dec 1 and less than .1 on Jan 12.
Jan 18 Dad had a bladder scope and biopsy. That found that there was neoplasm from the 5:00 to 9:00 position of the bladder neck. The bladder wall, bladder mucosa, trigon and ureteral orifices were otherwise normal. These came back as prostate cancer cells.
So, Dad was off of his Coumadin for 6 days. On Jan 22 he had a small stroke. It was the most terrifying moment of my life. He is ok and didn’t have any long lasting side effects, thank God. If he has any other procedures he will have to do a bridge with Lovenox.
So, praying that the Lupron continues to shrink and stop the cancer in the prostate bed, bladder neck (they believe they got all of that out) and the theee very small spots on ribs. He is going to be scheduling a colonoscopy to get that suspicious uptake that was seen on the PSMA PET Scan checked out as well. His gastroenterologist was not concerned with it after seeing the scan but urologist wants to check just to be sure. Everything is so close together in that area and he did have radiation to prostate bed in the past so maybe scar tissue. They inserted a balloon into rectum for radiation. He has consistent colonoscopies due to having Crohn’s disease (which has been in remission for years).
Sorry for the long post! A lot to catch everyone up on!
Posted 2/21/2022 9:58 PM (GMT 0)
You said they believe they got all of the cancer from the bladder neck out… does that mean they were able to remove the cancer from the bladder neck during the scoping procedure?
I’m curious as my husband had a positive margin at the bladder neck.
Posted 2/21/2022 11:27 PM (GMT 0)
Yes, they did that when they did the scope/biopsy. Good luck!
Posted 2/22/2022 3:52 PM (GMT 0)
So sorry to hear about the stroke--I'm sure that shook everyone up. But good news on the PSA front! Do keep us posted as to how he is doing!
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