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Prostate cancer progression
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Prostate Cancer
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theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/12/2020 8:33 PM (GMT -5)
Hello I have not posted in a while. My first biopsy showed Gleason 6 and genomic test was very low risk. Couple years go by now Gleason 6 but Decipher genomic test shows high risk with 14.0% death in 10 years. So I'm off to NYC to see oncologist for radiation. I'm scared of the manner of treatment because im extremely claustrophobic. I had to take a sedative for a ct scan. I fear multiple radiation treatments. Maybe they can implant seeds. I hear that is done under general anesthesia. I am not a wuss but due to PTSD, I dread closed spaces.
I'd be grateful for information
Glen Aka Billypilgram
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/12/2020 8:38 PM (GMT -5)
Apology for the brevity of this post. I'm on phone and cannot type well. Had recent second biopsy with same Gleason score 6 but had another positive core.
First genomic test was Oncotype the new one was Decipher to clear things up
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/12/2020 8:55 PM (GMT -5)
Decipher 0.76
Risk high grade 22.4%
Risk metastasis within 5 years 22.4%
Prostate cancer death 10 years 14.0%
InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 3/12/2020 9:11 PM (GMT -5)
Brachy seeds might be a good option. That is a outpatient procedure done under anesthesia.
Also, the RT machines they use for beam radiation are
open machines - no enclosing tunnels and generally in very big rooms. Ask if you can see one before you decide.
and ask about
SRBT - that's only five treatments.
But, all in all Brachy might work just fine for you.
Andrew
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/12/2020 9:37 PM (GMT -5)
Thank you. That was very helpful. Yes 5 treatments is doable. I can get sedatives from my family doctor if need be for so few. He would prescribe 5to 10 lorazepam or valium but no more, nor would I want to risk taking them longer for fear of addiction or benzo withdrawal
I see the doctor on the 25th. He is head of radiological oncolgy at a major Manhattan hospital (and a really nice guy. I saw him after my first biopsy)
Glen
InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 3/12/2020 9:49 PM (GMT -5)
Most ROs are more than willing to do whatever the patient needs during treatment. Discuss your issues with him and I'm sure there will be a workable solution.
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/12/2020 10:16 PM (GMT -5)
Thank you.
JNF
Veteran Member
Joined : Dec 2010
Posts : 6097
Posted 3/13/2020 1:55 AM (GMT -5)
The Linac machines are nothing like a CT or MRI. You are in a wide
open room. You are in no way enclosed by the machine. Google the treatment method or go to the manufacturer site like Varian or Elekta and you will see. I had an MRI for my knee and nearly freaked out. But have the external beam radiation is no comparison.
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 5:51 AM (GMT -5)
Thank you. I may be pleasantly surprised. I did go to YouTube and viewed the treatment but could not really decide if it would not bother me.. I'll ask if I can check it out in person.
Glen
Duck2
Regular Member
Joined : Dec 2019
Posts : 478
Posted 3/13/2020 5:59 AM (GMT -5)
Here is a video. https://www.youtube.com/watch?v=rzNzNBqay5k
trailguy
Veteran Member
Joined : Jul 2015
Posts : 950
Posted 3/13/2020 6:02 AM (GMT -5)
Thanks for the Slaughterhouse 5 reference, Billy. Time tripping again?
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 8:24 AM (GMT -5)
Welcome
I always liked the ideal's of the "Tralformadaren's" string of life's good moment's and bad moment's strung out and revisited. It went with my philosophy of "This too shall pass " and relishing the good and accepting the bad. The book for me anyway was a masterpiece written in simple language with humor that eased the horror of it's real life content.
Kinda dealing with that "string" right now
Thanks
Jesse W
New Member
Joined : Jan 2020
Posts : 8
Posted 3/13/2020 8:30 AM (GMT -5)
I am currently going through the external beam. As others have indicated, it is an
open machine in a large room. You are in an out in only a few minutes. It is going a lot easier than I anticipated.
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 8:43 AM (GMT -5)
Thank you. These eyewitness accounts are helping to ease my anxiety. The test information was just revealed to me Wednesday so I'm still in a "denial" and anger stage.
To
open another can of worms is the fact that I am extremely hypogndal and am on testosterone replacement. I know that has to end but for me, that is a big issue. My mental health is horrible when my testosterone drops. My hope is that I'll be able to return to injections post radiation. I know there are strong opinions against this.I don't want to debate. I live in my body and know how it feels with testosterone in the 50,s
halbert
Veteran Member
Joined : Dec 2014
Posts : 6226
Posted 3/13/2020 8:52 AM (GMT -5)
Swan, you're still G6, and still in AS territory. Why are you making the decision to treat?
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 9:04 AM (GMT -5)
Good question. My urologist is telling me to have radiation therapy due to the Decipher genomic test showing .76
It is weird that the biopsy showed a Gleason score of 6 but Decipher test has me at high risk with a 14% chance of death within 10 years
I am going to a NYC hospital for radiation therapy but will run this by the specialist there first.I saw him 2 or 3 years ago for a second opinion and he seems to be a good man and is head of radiological oncolgy.
I of couse would rather stay on AS
Glen
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 9:09 AM (GMT -5)
I did not know we could post doctor or hospital names but seems we can. My urologist is in Poughkeepsie New York but I'll get treatments at NY Columbia university hospital
Paxton
Veteran Member
Joined : Aug 2016
Posts : 1493
Posted 3/13/2020 11:39 AM (GMT -5)
Yes, do check out SBRT. I had the CyberKnife treatment a few years ago. In my case, it was only 5 treatments, but they were about
45-60 minutes each (depending upon gas in the intestines, etc.). This was no problem for me, though, as not only was the machine totally
open, it was in a very large room, and they allowed me to bring my own choice of music to be played on their built-in (and rather high quality) sound system.
Couple that with the nice warm blanket they covered me with each time, and I literally slept through my treatments.
As the others have suggested, it might be worth asking if you could take a tour (and maybe even a trial time on the table) of the treatment suite at the facility of your choice.
None of this is "fun" but this type of treatment was, I found, pretty much a non-issue for me.
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 1:41 PM (GMT -5)
Thanks. Glad to hear all the response
Curious, are you on testosterone replacement? Were you able to return to it post surgery?
I am extremely concerned because I am an emotional basket case when my T lowers into the 50's
Glen
Mumbo
Veteran Member
Joined : Nov 2018
Posts : 2848
Posted 3/13/2020 1:56 PM (GMT -5)
Glen - I don’t see where you would need hormone deprivation therapy or lack of shots in your case. You don’t have a “problem” that needs that treatment as far as I can tell. It would seem that a mono therapy, pick one, would be fine if you don’t stay with AS for a while longer. I can see where the high Decipher score might make you want to get it over. Definitely things to talk over with the doctors.
InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 3/13/2020 2:02 PM (GMT -5)
Glen - what Mumbo said, doubt you need HT for this. You're in a low risk group so mono therapy should work just fine.
I think that's what the doc will say.
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 2:06 PM (GMT -5)
Yes thank you. My wife of course wants me to act out of fear of losing me. I too would be happy to get it over with but I'm having a hard time with the biopsy coming back Gleason score of 6 and the 2019 genomic study by Oncotype being " very low risk " so now Decipher genomic test shows high risk?
I'll talk it over with the oncologist but wonder if he is unbiased after all radiation therapy is his specialty
Lots to discuss
Glen
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 2:18 PM (GMT -5)
Just to be clear "Mono " therapy means radiation or such?
My urologist wanted to do androgen therapy in preparation for radiation.
I flat out refused. I as said do horribly with low T and dread going to near zero testosterone. If my life was in extreme danger, I'd bear up and do it for my sake as well as my family but if it can be avoided or postponed, then that choice is clear.
Glen
InTheShop
Elite Member
Joined : Jan 2012
Posts : 11468
Posted 3/13/2020 2:32 PM (GMT -5)
Means one type of treatment. Just surgery or just radiation rather than RT + HT.
theswan
Veteran Member
Joined : Nov 2005
Posts : 1829
Posted 3/13/2020 2:46 PM (GMT -5)
Got it thanks
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