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Hmm

Steve1961
Posts: 219
Joined: Dec 2017

Hmm

 

VascodaGama's picture
VascodaGama
Posts: 2969
Joined: Nov 2010

You are on the good truck. The results from RT take longer to show up. Bounce PSA may be seen too. In some cases it can take 2 to 3 yaers to reach to a nadir. So far so good. Let's wait for more results to certify the cure.

Best

VG

Steve1961
Posts: 219
Joined: Dec 2017

according to American cancer society if you reach in 2 years or less you have a better chance of cure 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

This treatment method, which generally also includes hormone therapy, generally has excellent results. Problem is you're never quite sure, because PSA never goes away entirely. With surgery the PSA usually drops to zero and stays there, if it was successful, or starts to go back up again if it wasn't. With primary RT of any form the PSA bounces around as the cancer cells slowly die off. And because the prostate gland is still in there, PSA is still produced.

My understanding of the reason very few doctors do HDR Brachy is that there are so few treatments that there's no money to be made in it. They insert the tubes and inject the isotopes and then pull them back out and you're done... leaving the patient to wonder if it's really working or not. Don't worry though, there's nothing else you can do now. Once you've chosen this path you have to stick it out until the end.

Georges Calvez
Posts: 229
Joined: Sep 2018

Hi RobLee,

It is the same with a lot of treatments.
I have had my prostate out plus 66 Gy to the prostate bed and I have now had ten months of hormones, I can talk with my urologuist and we can play is 18, 24, 36 months of ADT for better or worse but at some time I have to stop the ADT and see.
You just have to hold your nerve, stick it out and hope.

Best wishes,

Georges

Steve1961
Posts: 219
Joined: Dec 2017

I just need to stop thinking this isn’t goin* to work ..the thought of hormone treatments the rest of my life would do me in ...I already have a muscle disorder ..I am sure there are many men out there that have been cured with many Treatments and we don’t hear about them ...my wife’s uncle had seeds 30 years ago he is good ..my aunts husband had surgery at age 70 he is 84 now lols like he is 65 ..I just need to be hopeful and happy ..by my stinking nerves won’t let it be ...damnit ...I keep thinking how could I have skipped plan a knowing that I had an aggressive type of cancer with a greater chance of reoccurance...I feel guilty and ashamed ..hopefu it will all work out for all of us ...god bless...oh BTW combo treatment is huge Money  twice as much as surgery ..thinks that’s one reason he pushed it on me 

eonore
Posts: 36
Joined: Jun 2017

Hey Steve,

 

I am sorry you are struggling so much.  Believe me, I have had very similar feelings.  It can be very hard to get out of your own thoughts and just enjoy life.  Two suggestions for what they are worth.  One, although I really get a lot out of this forum, I would not hesitate to join a local support group to meet and talk to other survivors.  Two, if you find that you can not stop these obsessive thoughts, you may want to speak with a doctor about some chemical help.  I have taken 20 mg of Paxil for many years.  It is the lowest therapeutic dose, but it takes just enough of the edge off that I can do the rest of the work myself.  I resisted for a long time, out of some kind of misplaced machoism, but I am glad that I changed my mind.  You don't have to suffer unnecessarily.

 

Eric

hewhositsoncushions
Posts: 267
Joined: Mar 2017

Steve

I sympathise. We need strong nerves in this game. I am going through the same agony with SRT. We just have to hang tough and wait it out. Posting here really helps rather than bottling it up.

H

Steve1961
Posts: 219
Joined: Dec 2017

I take it before you had surgery you did not know that you had  cribiform ..see with me I had 2 reports that showed your average 3+4 2 cores 3+3 1 core ..so I waited 5 months for this other well known surgeon only to hsve him do a third report and this time say I had cribifirm....unfortunately You had a relapse after surgery rather soon most likely had to do with the cribiform and this is why I am extremely worried

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

My prostatectomy was two and a half years ago, with adjuvant RT a year later. My HT was to be 18 months, but now a full year after my last Lupron shot, my testosterone level is still eleven (11).  As most of you probably know, normal is 300-700.  Although my PSA has been essentially undetectable, I won't know if the triple play was truly effective until after the testosterone begins to rise again. So far, that's not happening. So as you said, all I can do now is "stick it out and hope."

Regarding chemical help, the chaos surrounding my own cancer treatments really stressed me out. I was crying all the time. The effects of the Lupron only compounded my emotional instability and I experienced frequent outbursts, especially with my wife's lymphoma diagnosis just within a few months. None of my doctors were any help. I had to personally research antidepressants and determine which one might be most effective for what I was going thru. Though I was initially reststant, as eonore stated, eventually I demanded a script for venlafaxine from my GP. It has been very effective for nearly two years now. One must be their own advocate.  Doctors don't take hints and wherever possible, they tend to just do nothing.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3256
Joined: May 2012

Glad to see you writing again, Rob.  You probably know that several of us were concerned about you a while back.

max

Georges Calvez
Posts: 229
Joined: Sep 2018

Hi RobLee,

Around 55% of men will recover something approaching the lower limit of testostrone after 18 months ADT, some men get a double whammy, their testosterone does not recover and the cancer returns in the castrate resistant form.
I think mine is unlikely to recover as the degarelix has caused my blood pressure and blood glucose to rise and these are bad indicators for recovery.
My libido is still active and although my body is physically dead from a sexual point my mind continues with erotic dreams up and including quite painful orgasms.
I was offered antidepressants that might have got rid of this little problem by destroying the mental side of my libido as well but I refused.

Best wishes,

Georges

Steve1961
Posts: 219
Joined: Dec 2017

I’m  taking my  wife  Advice I wish I did one year ago I’m staying away from this form all it does is just make me more scared more worried going to hope for the best hearing all the stories just makes me think this is what I’m in for and I can’t be thinking like that if anything hopefully I have five or six more years or more who knows I could be cured for all I know I need to stop thinking like this...Good luck and hope for the best for you all ...

lighterwood67's picture
lighterwood67
Posts: 185
Joined: Feb 2018

You are not done.  You are moving on.  In another year, I bet you will pop up and tell us you are fine.  Good luck to you.

lmspsa
Posts: 1
Joined: Feb 2019

 

Steve,

 

I am on another forum that you used to frequent. I had dual treatments, almost same as you, except ldr Brachy for me. Now, everyone is different, but it can take up to 18 months for your psa to stabilize after the dual therapy you had. So the fact that your psa is decreasing, you need to look at that as nothing but a positive sign. 6 months is not enough time for your psa to decrease to what you want. Most likely you might even see a bump in your psa, but don’t freak out unless its increasing like a bat out of helll.

 

Peace out and hang in there.

 

By the way, I go in for my first psa checkup 4 months after ldr brachy this coming Monday. Am I freaked, nope, because I know not to freak until waaaaay later if my psa hasn’t decreased all that much.

 

Steve1961
Posts: 219
Joined: Dec 2017

 This is the reason why I am so so so worried. If you look up anything about cribiform there’s almost a damn guarantee that you’ll have a relapse. I cannot believe this surgeon after telling me the new diagnosis said that either treatment would have equal results I wish instead of panicking I would’ve gone and researched That cribinform because now I don’t have much choice if it comes back where as if I did surgery I would.  And please please nothing negative here OK George and other people if we can’t find something positive please don’t say anything at all 

hewhositsoncushions
Posts: 267
Joined: Mar 2017

Steve

No one here is saying anything negative - we are all trying to help. If there is a disagreement it is simply because we think it better to dwell on the positive. No good can come of validating negatives.

With regards to cribriform, I was told by my UK forum wise one that even having read the reports the take away is that cribriform is a diagnostic marker to upgrade a 3 to a 4 with proportionate grading and risking. it does not add risk - it qualifies it. I was graded 4 + 3 based on ALL the patterns which included cribriform and mucinous. My recurrence was more likely down to PNI within the gland, hopefully very localised. I have learned to accept that.

You need to come to a place where you accept your choice and move on. Literally nothing good at all can come of agonising over your choice. You are at an early stage in your journey and there is nothing to indicate yet that the journey will have less optimal outcomes. Hang on and look forward.

H

Clevelandguy
Posts: 427
Joined: Jun 2015

Hi Steve,

Did you get diagnosed with cribiform before or after your radiations treatments? Sounds like your Psa is slowly receding after your treatment which is what it should do.  Like Vasco said it might take a few years for you Psa to become undetectable. If you had cribiform before your treatment I would hope the radiation would kill it.  From what little research I did sounds like cribiform is a slow growing type of cancer.

Dave 3+4

Steve1961
Posts: 219
Joined: Dec 2017

The third pathology report said it was cribiform the first 2 didn’t ....bad I don’t know what research unr doing but cribifirm is aggressive and rare u must be looking st breadt cancer .cribifitm ..I just pray it all works out 

Clevelandguy
Posts: 427
Joined: Jun 2015

Hi,

Was surfing the web on Cribiform and it said that there is a benign cribiform found in BPH, did you have BPH? Do some web surfing on benign cribiform in prostate cancer.  Might want to talk with your doctor to see what type you have.

From the article I was reading “The spectrum of cribriform lesions includes benign, premalignant, and malignant lesions, and differentiating them can often be subtle and difficult. Intraductal carcinoma of the prostate in particular is independently associated with worse prognosis, and its presence in isolation should prompt definitive treatment”.  Hope this helps...this comes from archives of patholgy.org On the web.

 

Dave 3+4

hewhositsoncushions
Posts: 267
Joined: Mar 2017

Cribriform is a feature rather than a type and exists as a spectrum. I have done the research and it suggests that it is used to guide grading which at the end of the day is the best marker for a situation unless you have something out of the ordinary like small cell.

Georges Calvez
Posts: 229
Joined: Sep 2018

Hi everybody,

May I respectfully offer you an article that says much on Gleason grading and cribriform in particular.
Pour yourself a big glass of Buckfast, kick off your shoes, sit back and enjoy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5861292/

Best wishes,

Georges

hewhositsoncushions
Posts: 267
Joined: Mar 2017

Yup - confirms what I have been told - Cribriform is a marker for upgrading to a G7 which means that the patient has therefore on average a G7 level of risk.

Steve1961
Posts: 219
Joined: Dec 2017

https://www.ncbi.nlm.nih.gov/pubmed/25189638         Because what I find as of late research is not good st all 

hewhositsoncushions
Posts: 267
Joined: Mar 2017

Steve

It almost feels like you want to be told you are going to die. We aren't going to.

That report is one meta study with a handful of cases. The last grading symposium put cribriform as a 4 regardless of other path. If it was worse they would have put is as a 5. Thats it.

H

Steve1961
Posts: 219
Joined: Dec 2017

just need to stop looking things up and keep busy ..it’s just tough ..and no I don’t want to die from this st all..just scared crap less 

hewhositsoncushions
Posts: 267
Joined: Mar 2017

Steve

I get it. I really do. I have been there and so have many others but chewing over the vast amount of information out there just leads to a tailspin. Research papers have a lot of issues around things like repeatability, interpretation, bias, accuracy, sample size. sample age and there are a lot that conflict each other. It has been proven that patients doing their own research often misinterpret information and make things seem worse. Keep informed, yes but take a pinch of salt, verify and trust your medical team. Fill your mind with good thoughts and your time with good actions.

H

Steve1961
Posts: 219
Joined: Dec 2017

it’s just for some reason I am always being reminded of it..

hewhositsoncushions
Posts: 267
Joined: Mar 2017

It is all about where you focus your thoughts.

When I get down I put Alan Watts on Youtube or read inspirational books like "The Tao of Poo and the Te of Piglet" or even go out for a walk.

Find people who enjoy life and spend time with them. We are wasting the time we have worrying about the future, remember that!

H

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

True story from last week. 

Tumor found during Abdominal CT scan for appendicitis. 

PCP and I determine that we should probably do a full body to rule out Mets. He says he will call me withthe appointment when they get it set up. 

Doc calls 3 days later to tell me health insurance declined it. 

They however reccomend a nice chest X ray instead. 

(Insert eye roll here)

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