Decisional regrets

Hi All,

In my case even though I have had 4 yrs. of undetectable readings every year I am really concerned when I get my PSA report.  But the way I see it, I will just have to deal with it if it does return so why waist my time worrying.  It won’t do any good, won’t change the next treatment plan, won’t  prolong my life.  If and when it returns I will deal with it at that time.  At 67 years of age I want to live as much as I can over the next how many years I have left.  I don’t worry about getting hit by a truck, jealous lover,typhoons, earhtquakes, ect.  I could never have cancer again but get hit by a freak tree/car accident during a thunderstorm.  I just put it on the back burner and only really worry before each PSA test.  I try very hard not to let my cancer consume my life, it is a very mentally destructive way to live in my opinion.  Life is really too short at any age to dwell on things you have very little control over.

Dave 3+4

Gut (surgery) or nuke (radiation), there is no really telling how your body (test tube) is going to react.  Good outcomes, bad outcomes, we have not hit the bullseye on the best treatment for PC. I hate it for the folks with the bad outcomes.  I hope that they get better.  It makes me feel like I just got lucky.  Well, those decisions are always the hardest ones.

Steve1961 said:

Side effects

 Really if I could do it again I would run to the hospital for surgery. It seems like all I hear on this board is men bitching about ED.  You guys are all NED and are fully continent  and  some have problem with ED or maybe a smaller penis oh boo-hoo. I know you’re at all saying sure I say that now. Radiation treatment effed me up every which Way but sideways. I have to take Flomax just to P I have not had a decent BOwen movement in a year.  I don’t know what it did to my colon rectum or bladder. My PSA level is only down to 3.6 it may never reach NED. I put a poison in me to kill a poison that I don’t even know will work. This poison could actually create more cancers. Radiation should only be used  for prostrate cancer as a last resort. Last resort meaning surgery failure or if you’re too old or not healthy enough for surgery.  It should be a mandatory practice that every urologist must perform an MRI before any biopsy. Like what was said before in the tread most cancers you only have one option and I wish to God it was the same for prostrate cancer because then I would’ve done the surgery.

 I can go on  about this forum people tellIng me take your time do your homework get multiple opinions ****. The first radiologist I saw Recommended that I do surgery the first surgeon I saw Stanford also recommended surgery plan a and Plan B radition but I waited to see this third one waited for months and during those months I read about nightmares about surgery I heard about nightmares about surgery with me being a fatalist  is scared me ultimately chickened out that’s right I chickened out.

Surgery you do it once it’s done it’s done. You go home deal with the catheter for one week find out exactly what’s going on with your cancer and then in five weeks you know you are NED. Radiation five days a week for five weeks every day seeing people that are very sick people that are you dying young kids and they’re all using the same table and radiation as you. After the third treatment I am on my knees I couldn’t urinate. Dr. tells me to take Flomax second week of treatment diarrhea would not stop. And then after Breaky therapy  bleeding out my butt hole for a week and then having rectal leakage and not been able to control my bowels. And then I hear man bitching about ED in the smaller penis big deal. I screwed up I hope to God and I pray every night that it will turn out good now I get to go have a study done to see why am not urinating right it will probably have to have surgery. Then And then in a few weeks I get a colonoscopy to find out how much damage was done by radiation oh joy man sure wish all I had to worry about was ED what a bunch of whinears you guys are here. Unless you are sex fiends  or maybe your better halves need it bad  and you are afraid they may leave then  an erection I guess would mean more than what I am going thrun

akot of men here act and talk like they are drs..granted a few are scientists and I think that when a newbe asks for opinions ...radition should absolutely never ever even be mentioned as primary Treatment for PC if it is still contained ...NEVER ....and surgeons as well should never mention radiation as  primary treatment either .

I disagree re: radiation.  I am continent and active at age 73 with minimal side effects.  All Rx has the potential for bad outcomes but I am not the only one who has had a good outcome after choosing radiation.  

Age 68 at diagnosis 

2/2009 PSA 4.3 Biopsy negative

2009-2016 PSA climbed from 4 to 6

DRE all negative

2/2016 PSA 7.5

Ultrasound and DRE indicate nodule

Biopsy with 6 of 12 cores pos

Two 4+3 Four 3+3

5/11/16 Gold Markers Placed

5/5/2016 on Lupron and Casodex

6/8/16 Lupron Dose #2

7/2016 IMRT started 25 fractions 45Gy total

8/4/16 Flomax  0.4mg  started

Cyberknife boost 8/9/16 2 fractions 19 Gy total

Weight down to 128

9/1/16 Last Dose of Casodex

11/18/16 Hot flashes end; getting up 1-2 x per noc

12/6/16   PSA 0.1  T-Level 372

3/6/17     PSA 0.2 T-level 288

7/10/17   PSA 0.2 T-level 308  

11/16/17 PSA 0.2 T-level 311

6/13/18   PSA 0.2  T-level 202

9/21/18 psa <0.1 T-level 225

 5/28/19 PSA <.01 t-level 192

10/17/19 PSA <0.1 t-level 267

Cognitive dissonance

 From the article that MK provided the link:  "Cognitive dissonance, which is the intolerable mental discomfort of holding two contradictory ideas in the mind at the same time.   Men have had an irreversible operation that impacts their masculinity; they know they are suffering the consequences but they answer questionnaires in a way that ignores the suffering."  One would think that we would always base the treatment decision as, I need to choose a curative treatment, with minimal side effects.  Obviously from a side effects stand point, I would say that the surgery would have the most.  Due to the fact that the gland is physically removed; reconstruction of urethra; and sometimes lymph nodes removed.  In some cases surgery is not even an option.  So we find ourselves back to our decicision.  I based mine on what the surgeons and radiologist onocologist said.  I went with the surgery.  Is everything perfect and the way it has always been, no, and it will never be the same.  So, I make the best of  the decision that I made and move on.  Enjoyed reading MK's article.  I hope I read the right one.

Hi,

I hope your friend uses his time left wisely and does not let his disease consume him and his family. Nobody knows when their time is up due to disease or an auto wreck, industrial accident, ect.  If you dwell on it constantly it will eat you up mentally and physically. Take charge of the life you have left in this world and do something positive. If you let it, anxiety will rule your life and make it miserable.

I try to throw my brush with cancer as far back in my memory a I can so that I can live the life I want.  The neighbor behind me just found out he has Pancreatic cancer and his future is very clouded as he moves forward. It kinda puts my cancer issues in a background mode compared to his.  Might do both you and your friend a world of good to sit down and have a talk about your "situations", sometimes it's better to talk about it than hold it all inside.

Dave 3+4

I agree with Georges.  I did not join and contribute to this Forum because I was, or am, anxious.  Not at all.

I joined, first, to learn about fellow PCa patients' experiences, as I wanted to gain knowledge of their perspectives and experiences on PCa, related to diagnostics and recommendations, grading parameters, treatment options, and resulting side effects, directly from the patients themselves, after I initially received this perspective from my medical providers.  Having the knowledge of these multiple perspectives and experiences from actual PCa patients was essential to me, in order for me to make my own assessments and decisions, going forward, on how I would approach and plan my journey with PCa.

I joined, second, because I believe in giving back knowledge and perspective to others, commensurate with receiving them from others.  I have freely shared my expereinces related to my journey with PCa, with the understanding that some folks on this Forum may find it useful and beneficial to them in their journeys with PCa.

I used to get anxious just before each PSA blood draw, in the 30+ months of having a non-detectable PSA score, following radiation therapy.  However, once my PSA score became detectable again, most of this anxiousness has disappeared.  Now, I simply deal with the test results, and then assess/re-assess and embark upon recommended treatment plans, that make sense to me and my own PCa journey, as they occur.

And, most important, I continue to strive to gain the most out of my life and those around me, each and every day, as none of us are here in this plane of existence forever.

We each approach our PCa journeys differently, and that is OK.

Josephg said:

I agree with Georges.  I did not join and contribute to this Forum because I was, or am, anxious.  Not at all.

I joined, first, to learn about fellow PCa patients' experiences, as I wanted to gain knowledge of their perspectives and experiences on PCa, related to diagnostics and recommendations, grading parameters, treatment options, and resulting side effects, directly from the patients themselves, after I initially received this perspective from my medical providers.  Having the knowledge of these multiple perspectives and experiences from actual PCa patients was essential to me, in order for me to make my own assessments and decisions, going forward, on how I would approach and plan my journey with PCa.

I joined, second, because I believe in giving back knowledge and perspective to others, commensurate with receiving them from others.  I have freely shared my expereinces related to my journey with PCa, with the understanding that some folks on this Forum may find it useful and beneficial to them in their journeys with PCa.

I used to get anxious just before each PSA blood draw, in the 30+ months of having a non-detectable PSA score, following radiation therapy.  However, once my PSA score became detectable again, most of this anxiousness has disappeared.  Now, I simply deal with the test results, and then assess/re-assess and embark upon recommended treatment plans, that make sense to me and my own PCa journey, as they occur.

And, most important, I continue to strive to gain the most out of my life and those around me, each and every day, as none of us are here in this plane of existence forever.

We each approach our PCa journeys differently, and that is OK.

It would be nice to have a like button to click on when a post like Joseph made.  Thank you.