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Posted 5/4/2023 10:58 PM (GMT 0)

davie1803 said...

Sr Sailor said...
Thanks davie for providing a lot of background info. You have certainly 'done your homework'. I agree that the proposed path makes a lot of sense.
Considering that your prostate will see a lot of photons, be prepared for some urinary problems. There are drugs to help with that.

Thank you, Sir!
Urinary problems probably one of the tradeoff rather having life threating disease, i will be ok with the help of some drugs but hopefully i will be cancer free.

BTW! my daughter will be Graduated from Med school (USC) the end of this month and eventually she will start residency to become Pediatric Dr. The timing of my treatment mostly happens in Mid-June thru the end of August.

Thank you all, greatly appreciated

########

the one urinary problem you won't have to worry about is the big one: incontinence

avoid surgery unless you are cool with wearing diapers for maybe the rest of your life
Posted 5/4/2023 11:25 PM (GMT 0)

F8 said...


the one urinary problem you won't have to worry about is the big one: incontinence

avoid surgery unless you are cool with wearing diapers for maybe the rest of your life

OMG! thinking about of having to wear diapers is a big driver for me to ruled out of surgery route, i meant i understand that if a good experienced surgeon can successfully spare the nerves than surgery will be ok, in my case my insurance is not very good and financially i can't afford to be travel to elsewhere for that famous surgeon.

Post Edited (davie1803) : 5/5/2023 12:02:49 PM (GMT-8)

Posted 5/5/2023 1:31 AM (GMT 0)

davie1803 said...

F8 said...


the one urinary problem you won't have to worry about is the big one: incontinence

avoid surgery unless you are cool with wearing diapers for maybe the rest of your life

OMG! thinking about of having to wear diapers is a big driver for me to ruled out of surgery route, i meant i understand that if a good experienced surgeon can successfully spare the nerd than surgery will be ok, in my case my insurance is not very good and financially i can't afford to be travel to elsewhere for that famous surgeon.

#####

my uro told me he could operate on me and i wouldn't be incontinent but, he said.... i would most likely need salvage radiation and then all bets were off
Posted 5/5/2023 2:15 AM (GMT 0)
I had surgery and radiation and have been continent since surgery. My Dad is 95 and incontinent. He had brachytherapy for PCa and assorted urinary issues in the years after. So what does this tell me, absolutely nothing other than random points over time. My main issue with surgery is that it is a rigorous abdominal surgery and its effects stayed with me for a fairly long time, others may be running marathons in a month but not me and I have had lots of surgeries. Compare that to 5 treatments of SBRT now that the process has been pretty well perfected by the major players is not much of a comparison and I tend to like that option now.
Posted 5/5/2023 10:47 AM (GMT 0)
Hi Davie. It seems to me that the treatment you have chosen is very likely to cure your cancer. With one core I think it may be a bit of overkill but that's clearly between you and your docs. Obviously "heavier" treatment gives better cure chances but also higher chances of side effects.

One thing I have not seen mentioned is advice for you to get a second opinion on your biopsy slides. I posted stories recently about friends who have gone to Johns Hopkins for second opinions and gotten major changes in their prognosis. One got significantly worse and one got significantly better. What if JHU changes you to G6? Or 3 + 4 with lower percentages? In my opinion it's better to have more knowledge before making serious decisions like this and a JHU opinion may either confirm your decision or give you pause.

Good luck in any case.

Jim
Posted 5/5/2023 3:10 PM (GMT 0)
To me a short course of ADT and the combination of HDR and IMRT both make perfect sense based on the information. First, ADT is very typical with radiotherapy as it helps sensitize the PCa to the radiation damage. Second, look at the positive core. 40% involvement is significant and the 4+3 is 95%+5%. So essentially this should be viewed more as 4+4=8 from a risk perspective.

From a treatment perspective, this borders on high risk and would not support HDR mono therapy without ADT. Your risk to more, but not yet discovered, PCa is significant and elevates the need for more aggressive treatment. Davie, I share your perspective of one shot to get this right from the start and to hit it very hard while it is at its lowest known level.

The side effects of a six month course of ADT are very minimal, easy to overcome after the period, and little risk to longer term issues as compared to longer courses of ADT. The combination radiotherapy presents, for most men, little added negative treatment side effects that routinely resolve within a few weeks after the last fraction.
Posted 5/5/2023 3:18 PM (GMT 0)
@Tudpock18

Thank you for your advices.

Yes i thought about sending biopsy slide to JHU, i did mention it to the docs @ UCLA. Here is the things:

My one positive core: Left transtion Zone: ADENOCARCINOMA GLEASON SCORE: 4+3 = 7, INVOLVING 40% GRADE GROUP: 3 GLEASON SCORE4: 95%
as you can see gleason score4: 95% mostly like if i send it to JHU it could be G8, otherwise for the better will be 3+4=7 even if i go with surgery route and then pathology report will be either, Primary RT treatment likely one shot to kill this virus (RP will have RT backup if it fail). My thought that if i have one shot and avoid the high risk of incontinence why not treat it as G8 in the quest to be hopefully cancer free, staying alive the ultimate goal of mine, yes it will be some pay off for the treatment, it is obviously i don't want to end up wear diaper for the rest of my life, 10 years from now once i got older, the ED problems most likely getting decreased by age not mention urinary problems could cause by something else like kidneys, bladder, infections.. e.t.c.
Folks from UCLA saying whether G 3+4=7 or G4+3=7 or G4+4=8 i am still falling into the almost same treatment route, unless the disease falls into higher risk level. I thought the advice from UCLA does make sense.
So Urinary problems, Temporary ED even Rectum problems from radiation better than treat the disease and then still facing recurrence 3, 4 or 5 years down the road and then the game will start all over again, it cost money which i don't have and not so good insurance policy from my employer.
Does it make sense anyone?

Post Edited (davie1803) : 5/5/2023 7:48:08 AM (GMT-8)

Posted 5/5/2023 3:34 PM (GMT 0)

JNF said...
To me a short course of ADT and the combination of HDR and IMRT both make perfect sense based on the information. First, ADT is very typical with radiotherapy as it helps sensitize the PCa to the radiation damage. Second, look at the positive core. 40% involvement is significant and the 4+3 is 95%+5%. So essentially this should be viewed more as 4+4=8 from a risk perspective.

From a treatment perspective, this borders on high risk and would not support HDR mono therapy without ADT. Your risk to more, but not yet discovered, PCa is significant and elevates the need for more aggressive treatment. Davie, I share your perspective of one shot to get this right from the start and to hit it very hard while it is at its lowest known level.

The side effects of a six month course of ADT are very minimal, easy to overcome after the period, and little risk to longer term issues as compared to longer courses of ADT. The combination radiotherapy presents, for most men, little added negative treatment side effects that routinely resolve within a few weeks after the last fraction.

Thanks JNF,
I have no problems suffers SE from the short ADT (so far I have very minimal of SE on both casodex and lupron). the ultimate goal to rid of the disease once in for all and goes on with the rest of my life. UCLA docs did point out of my biopsy report and they insisted no need to be sending to JHU for second opinion. The treatment intended for 3+4=7 up to 4+4=8 and anything in between, this advices fairly missing from all the other oncologist center non mention this in details when i visited them.

Post Edited (davie1803) : 5/5/2023 7:42:19 AM (GMT-8)

Posted 5/5/2023 3:49 PM (GMT 0)
@Davie: I get your logic and, while it might not be the path I would have chosen, it certainly has a high likelihood of curing your cancer. You have thought it out rather well.

I still think that knowledge is power and would want to have the second opinion from JHU. But if you are set on your treatment course no matter what JHU might say then it's probably not worth doing it. It's just that I've been struck recently by rather dramatic pathology changes when done by JHU.

Jim
Posted 5/5/2023 4:49 PM (GMT 0)
Ten years out from “triple play”’treatment . The thinking decision time was to go big and hit it hard, given it all I’ve got captain approach. It was a long drawn out process.
Still under .1
Expect complete loss of ejaculate, somewhat less than full wood. I suppose if i used Cialis, it “wood” be improved lol
But that may be age related partially, no way to tell.
No regrets, considering what the alternative is
Good luck with your treatment
Posted 5/5/2023 7:19 PM (GMT 0)

Mumbo said...
I had surgery and radiation and have been continent since surgery. My Dad is 95 and incontinent. He had brachytherapy for PCa and assorted urinary issues in the years after. So what does this tell me, absolutely nothing other than random points over time. My main issue with surgery is that it is a rigorous abdominal surgery and its effects stayed with me for a fairly long time, others may be running marathons in a month but not me and I have had lots of surgeries. Compare that to 5 treatments of SBRT now that the process has been pretty well perfected by the major players is not much of a comparison and I tend to like that option now.

i've been on this board a long time -- more than a decade. the vast majority of incontinence is due to surgery -- with and without SRT. many surgery guys who claim they are FULLY continent are fibbing. if your dad posted on this board we could maybe chalk one case of incontinence to radiation because offhand i don't recall any others
Posted 5/5/2023 7:26 PM (GMT 0)

Fauntleroy said...
Ten years out from “triple play”’treatment . The thinking decision time was to go big and hit it hard, given it all I’ve got captain approach. It was a long drawn out process.
Still under .1
Expect complete loss of ejaculate, somewhat less than full wood. I suppose if i used Cialis, it “wood” be improved lol
But that may be age related partially, no way to tell.
No regrets, considering what the alternative is
Good luck with your treatment

Thank you Fauntleroy for the details side effects, I would like to know more if anyone have other side effects so i can be better prepared. Thanks, in advance.

So far had been on casodex 14days, and Lupron shot for a week now, haven't had any beside feeling a bit tired and hot a few times.

Post Edited (davie1803) : 5/5/2023 11:29:16 AM (GMT-8)

Posted 5/5/2023 8:49 PM (GMT 0)
Loss of ejaculate is pretty much a given--although for some reason I personally never think of that as a side effect. I've never had any ED issues following treatment--nor did I have it while on 18 months of ADT. Now, I will say that I had zero libido while I was on ADT, so the ability to maintain wood wasn't all that meaningful. FWIW, my doc had me on Cialis the entire time I was on ADT to help with penile health.
Posted 5/5/2023 9:01 PM (GMT 0)

Michael_T said...
Loss of ejaculate is pretty much a given--although for some reason I personally never think of that as a side effect. I've never had any ED issues following treatment--nor did I have it while on 18 months of ADT. Now, I will say that I had zero libido while I was on ADT, so the ability to maintain wood wasn't all that meaningful. FWIW, my doc had me on Cialis the entire time I was on ADT to help with penile health.


Got it! thank you and appreciated!
Posted 5/6/2023 1:46 AM (GMT 0)

Somebody said...
if your dad posted on this board we could maybe chalk one case of incontinence to radiation because offhand i don't recall any others


Think about it, how many men do you know that had/have prostate cancer and are 95? Incontinence and prostates are nothing but trouble for old men as well as diabetes, etc. I have no idea if his brachytherapy caused anything but he had a few stricture procedures over the years that were attributed to the treatment.

Forums do not represent a good sampling of anything so proof of anything from them should be considered carefully. The fact that some forums are pro-surgery and some are pro-radiation would indicate that if you pick the wrong forum, you might get treated the “wrong” way. Davie is doing the right thing with his questions and research and that is all that is important here.
Posted 5/6/2023 3:35 AM (GMT 0)
@mumbo
@F8

Guys I came to this forum, and had learned alot after confirmed with PC, for me RP or RT treatment both does have pros and cons and no one treatment would fit to anyone. The most valuable of this forum provides good information for the newbie like me can have the place to gain the knowledges and experiences from peoples like you guys, so I can be aware and prepare i thank you all for y'all input and advices and it's no money can buy.

We are all in the same boat with this damn disease. I remember before my daughter admitted to medical school she has to take and oath that she would use her knowledge and specialty to save life with compassion also she has to take another oath before guaduated. The end of the day i have to make my own decision that based on my situation and trust my doctor.

By reading alot of PC survival stories, I've learned that 2 persons with the same treatment one very success with the good out come with minimal SE and have no underlying conditions tend to came out with least SE. Other have diabetes and heart problems suffers lot of SE so too different out come with the same treatment.

For me I am confident that i am a healthy person, I take no medication for any health conditions, My blood pressure under 120/80 any time of the day, annual blood work indicate everything in check and I believe i can over come with SE base on my health conditions and base on you guys inputs and suggested that helped me to make best decision that best for me.

I am truly appreciates everyone and this forum have prepared me the knowledges to fight this cancer! thank you guys. I will keep on update how i am doing along the way with my selected treatment and ask for advices in the coming days, weeks and months

Have a good rest and great weekend all

Post Edited (davie1803) : 5/5/2023 7:59:36 PM (GMT-8)

Posted 9/19/2023 9:00 PM (GMT 0)
Updated!!!

I am done with all the treatments, after 3 weeks from the final radiation I am recovered real quick and during EBRT doctor subcribes 60 days of flowmax but fortunately I don't needed it.

All and all for the whole entire triple treatments, i only suffers some fatigue, some hot flashes that's all for the SE.

Feeling very good, I would says almost to normal, no problems of urinated or bowel at all despites of aggressive treatments.

Will be getting my first PSA on December 11, finger cross!! Doctor told me upcoming PSA will not be real since i just got second 3 months of Lupron shot back in August. So he is talking about next June will be real PSA.

UCLA were the best and very minimal SE, no ED (old gun Johnson start getting up recent day) .. hooray!!

Recap:
* On casodex begining last May for 14 days, and first shot of 3 months Lupron on May 21st
* Got on 2 days of HDR on June 22, and June 29 ( 2 session each)
* Start IGRT on July 11 (with SpaceOAR)
* Got a second shot of the last 3 months of Lupron on August 21
* Finished 33 of IGRT on August 25th

Post Edited (dave1803) : 9/19/2023 2:13:31 PM (GMT-8)

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