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Screw radiation

Steve1961
Posts: 250
Joined: Dec 2017

a bit of good news finally PSA is 2.5 great.  ...down from 4.0.  3.6. 3.4. Bounce to 4.0 ... so now to get a dynamic uro study done .to see why I can’t empty my bladder ..I wonder why ..so answer me this ...if my prostate is cooked and is scar tissue how the hell is the urethra not .its probsbly. Real thin and hard now and the bladde muscles can only  push soo much and then stop .i am not a dr or scientist but what else is causing this ....I think I am going to go in a mission to make it mandatory or findable for any radiologist to never suggest or push radition on anyone under 65 who is in good health and seems to hsve the PC confined to prostate ..and especially has an enlarged prostate ...I am a mess ..I can’t believe I left a diseased prostate that’s right BPH is a disease ..a diseased prostate with a disease in it ..I used a poison to kill a poison that  could cause other cancers and may not cure the cancer ...wonder why I am having a tough time here .

hewhositsoncushions
Posts: 279
Joined: Mar 2017

You are having a hard time because you choose to do so

lighterwood67's picture
lighterwood67
Posts: 220
Joined: Feb 2018

Good news is good news.  You have thrown that rock into the lake and it has hit the water.  You cannot pull the ripples back.  So, lets see where this takes you.  Personally, I think your cancer is nuked.  You are experiencing some fallout, which is not unusual.  Stay positive, I think your best times are yet to come.

Steve1961
Posts: 250
Joined: Dec 2017

i am still upset with myself for making this poor decision .i have a neurological disorder as well which has left me with severe muscle atrophy in my calves ..I also seem to have carpal tunnel in my left hand severe now . I have urinary issues bowel issues ...it stinks ..I have a physically demanding job and it’s getting to me bad ...I also Am depressed and have anxiety over all this ..I just know if I would have done surgery everything would have been better ..I feel like a coward ..hopefully the good Lord will help me find peace of mind .i said how I feel about radiation now ..I am going to try hard to not post anymore..I just hope that all the members that are giving advice to newbies that they will never tell them to consider radiation as a first treatment ..personally as wonderful as all of you are ..I wish I never joined this forum ...just listened to the first radiologist I saw and the first surgeon I saw. They both recommended surgery ..I should hsve just verified their reasons why on the internet .i would have seen they were being truthful ...I would have been much better off ..sometimes knowing too much isn’t good ..I also learned not to tell a lot of people they all have their opinions a lot of them not do good ....thanks for the support I’m just whining now t so I am out 

MK1965
Posts: 179
Joined: Jun 2016

Steve,

I am not trying to get against you and your disappointment related to your treatment choice. 

I had RP and now, new problem was discovered a week ago when I had my 2nd colonoscopy in les then 3 years After RP.

it was discovreed devascularized area ( area with very minimal blood flow) in my ascending colon at the same hight where one of the robotic ports was during RP  with heavy scaring and adhesions in that place on my right side Which is trying to choke my ascending colon. GI doc took samples and sent to pathology. He thinks I will need surgical intervention to correct this issue, possibly soon.

As you can see; you got rotten apple with radiation and I got mine with RP.

Bad things are bad things with no mater how you landed on them.

MK

MK1965
Posts: 179
Joined: Jun 2016

Steve,

I am not trying to get against you and your disappointment related to your treatment choice. 

I had RP and now, new problem was discovered a week ago when I had my 2nd colonoscopy in les then 3 years After RP.

it was discovreed devascularized area ( area with very minimal blood flow) in my ascending colon at the same hight where one of the robotic ports was during RP  with heavy scaring and adhesions in that place on my right side Which is trying to choke my ascending colon. GI doc took samples and sent to pathology. He thinks I will need surgical intervention to correct this issue, possibly soon.

As you can see; you got rotten apple with radiation and I got mine with RP.

Bad things are bad things with no mater how you landed on them.

MK

Steve1961
Posts: 250
Joined: Dec 2017

the good thing is that st least your problem can be fixed ..with radiation a lot of times it’s permanent .thats. Why I think it should only be used as a last resort for PC period .

 

 

 

ufknkidding
Posts: 42
Joined: Aug 2019

I'm new to the boards and am glad you are sharing your experience.  Cancer sucks and treatment does too. I still have time (before my surgery) to do nothing but wait and watch. I could even just let it run its course and if it gets me in 15 years or longer so be it. I could say, yep, had a good 15 years living normal (minus the worrying) with cancer but at 65 or 70 bam die from metastitic disease.  Everything is a risk and a choice and no matter the choice, it changes our lives and our families lives. From your posts, your convinced radiation wrecked your life. It certainly changed it and I would be angry, sad, frustrated, and regretful as well. Vent as much as you need on here, we will listen and hopefully offer some support. Maybe map out a plan on paper with milestones you can meet towards what you would consider an acceptable life with the ailments you are experiencing. We all suffer and respond differently but YOU can take control of your spiritual and mental health which will affect your physical health.  The cancer and radiation may have negatively affected your physical health but you can recover to some point only you find acceptable. Wishin you the best man.  Sorry for your struggles and grateful for you sharing your experience.

Georges Calvez
Posts: 307
Joined: Sep 2018

Hi Steve,

Almost all of us go through bad experiences while being treated for prostate cancer.
I had some horrible pains with the gas post RP, then there was the fun with the catheter, mine managed to cut into the head of my penis which was pretty painful. Urinating, defecating, even farting could be painful for weeks after the operation.
The radiation was a breeze for me, 33 sessions for 66 Gy, my urine turned a little pink at the end and I had this funny doing a day after a hot curry stool in the morning but that soon corrected itself.
My current bugbear is the Firmagon, it does not affect me in the day but I suffer from leg pains, night sweats and insomnia that start at about 1 am and continue to 6am.
It pushed my blood pressure up to silly levels and increased my blood sugar and cholesterol so I am now on a cocktail of pills. I might be lucky and when I stop the Firmagon things may go back to close to normal and I can ditch the half dozen pills I swallow a day, on the other hand this might be a lifetime thing and I could live a long time in my case.
So I am sort of cured, quality of life is not bad, but could be better, here's hoping!

Best wishes,

Georges

Steve1961
Posts: 250
Joined: Dec 2017

 You guys are wrong. There is 180,000 men a year diagnosed with prostrate cancer 130,000 of tham  70% Will have surgery. I seriously doubt they all have bad experiences. It seems like only the people on this form of bad experiences. There should be a separate room for venting bad scenarios  everyone  should be positive.... people do not need to hear about terrible gas pains and accidental bowel cuts and penis bleeding and Urgnkidfing me  saying that I could die on the operating table   And this and that and this and that and this and that.that happened from surgery ..... i I have met quite a few  men that have had absolutely no problems After surgery and they remain cancer free for many years 10 1215 years and they all had surgery surgery is the way to go and what usually happens is some minor gas pains hospital overnight catheter for a week maybe some leaking ED  most of the time you are cancer free after five weeks and they go on to remain cancer free that is the NORM .. there’s nothing anyone can say doctors screwed me in this forum didn’t help me much I wish to God I stayed off of it. Radiation as primary treatment can screw you up permanently Waymore than surgery my God I wish I would’ve bled out penis head for a couple days I wish I would’ve just had painful  gas for a little while that all went away the things that I have wrong with me never will go away ...it’s criminal ...GEORGE YOU NEED TO STOP With all your horror stories ..not  everyone has terrible gas pains that everyone bLeeds at their penis not everyone lleaks terribly you need to tell New people THE NORM PERIOD ..LIKE lighter wood ...he thinks he is lucky .yes you are but only because he compares himself to this forum ..lighterwood is whatUSUALLY HAPPENS TO MEN  THAT HAVE  SURGERY AND CAUGHT IT EARLY ... I met a guy after two weeks on this form same ages as me same diagnosis as me everything same family wife you name it he did the surgery and breeze through it no side effects at all and he still cancer free I wish I would’ve just talk to him only stayed away from this forum  like he has done but I didnot it I’m gonna try hard to stay away .. what other cancer is there that you can actually leave in your body and be cured what the hell breast cancer is in an Organ  your breast why can’t they just do radiation for that and breakytherapy  for that instead of cutting it out but they always cut it out of thebladder and kidneys but no prostrate cancer you have options and all the options are freaking bad options only time you should have options if you’re over 70 and you’re in poor health otherwise no options take it out period .........

this may sound selfish Can a moderator please block me posting I need to get on with my life and right now I am stuck and this forum is not helping me at all sorry but thanks      Also I will be honest I private message almost every newcomer and I warned them about this form and some of the people on here and I always advise them to do the surgery and to stay away from this form hopefully this will get me blocked 

MK1965
Posts: 179
Joined: Jun 2016

Steve, 

You insulted every single RP surgery patient with your post, especially guys with some problems that are clearly secondary to prostate removal via RP. How can you talk about gas pains when you did not experience it? ThAt is senseless from someone who doesn’t know what pain feels like after you stabbed to your abdomen 6 times from cuts from 3/4 of an inch to 2.5 inches in lenght. Your abdomen was pressurized to 25 PSI and some surgery patients later on develop hernias because of weekend muscles secondary to that 25PSI inflation and micro muscle tears will sooner or later give up. 

You for sure don’t know how does it feel to be on the operating table for 5-6 hours with your body tilted head down 45 degrees. 

You don’t know how much heart and lungs are suffering for the surgery timewith all abdominal content pressingon on them plus abdominal Inflation with all pressure on diaphragm.

For sure, you did not experience anything similar in your treatment.

MK

MK1965
Posts: 179
Joined: Jun 2016

Steve, 

You insulted every single RP surgery patient with your post, especially guys with some problems that are clearly secondary to prostate removal via RP. How can you talk about gas pains when you did not experience it? ThAt is senseless from someone who doesn’t know what pain feels like after you stabbed to your abdomen 6 times from cuts from 3/4 of an inch to 2.5 inches in lenght. Your abdomen was pressurized to 25 PSI and some surgery patients later on develop hernias because of weekend muscles secondary to that 25PSI inflation and micro muscle tears will sooner or later give up. 

You for sure don’t know how does it feel to be on the operating table for 5-6 hours with your body tilted head down 45 degrees. 

You don’t know how much heart and lungs are suffering for the surgery timewith all abdominal content pressingon on them plus abdominal Inflation with all pressure on diaphragm.

For sure, you did not experience anything similar in your treatment.

MK

Steve1961
Posts: 250
Joined: Dec 2017

dont know about all that  sorry I guess we both had rough experiences ..I was told surgery would roughly be 2 hours give or take ..I read everywhere it’s between 2-3 hours depending on the size of person and prostate  . Filing one up with gas  and hernias and weak muscles from it and all that  never heard that  ..Like a Grinder said if you have bowel problems that’s on your surgeon its rare that that happens ..I have talked tp quite a few men personally  and on here as well  no Problems at all ..lighterwoodseems tobe doingjust great ..some  ED that’s it ..all I’m saying that most men don’t really have any problems after surgery unless there is complicstions which unfortunately you seem to have had ..I’m done with this for good ...I didn’t have a bad experience I was lied to about the side effects ..all the side effects I got were outlined  but the damn radiologist didn’t give me the brochure before hand if he did I would have saw all the side effects of radiation and I never would have done it ..don’t forget the guys here that  did radition don’t have a prostate there ..

lighterwood67's picture
lighterwood67
Posts: 220
Joined: Feb 2018

For your information, I posted this before.  I have developed a left inguinal hernia.  This may very well be a result of the RARP or may not be.  Sometimes folks that have RARP do develop herinas usually around the 1 1/2 year to 2 year point.  At this point the hernia is not impacting me.  I do go for a second opinion this month.  

eonore
Posts: 52
Joined: Jun 2017

Steve,

In one of your earlier posts I suggested that you get some mental health help, and I want to stress it again.  Your biggest problem right now is your mental health, not the aftermath of your treatment.  My whole life I have marveled at people I have met who face horrible circumstances, physical, financial, etc., with dignity and grace.  I have tried to model myself after them.  I had surgery as my primary treatment and I was left impotent, with two hernias and a section of collapsed lung.  My cancer recurred necessitating salvage radiation, and let me tell you, Lupron has knocked the **** out of me.  I am not trying to hold myself up as a role model, but frankly I am enjoying my life.  It’s possible.  Your anger and anxiety are ruining your life.  Stop stewing and get some help.  Posting the same post here over and over is not helping you.

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi,

Got to agree with eonore, I think you would benefit from some mental counseling to help you sort out you feelings.  Hope you can have a better outlook on life in the future.

Dave 3+4

Georges Calvez
Posts: 307
Joined: Sep 2018

Hi Steve,

This is pretty much the drill; strap you to the table, knock you out, hang you head down at 45 degrees so all your guts flop down and press on your diaphragm then pump you up so the surgeon has plenty of space to work, then poke a few holes for the camera and instruments, put the catheter up your penis, slice out the prostate and any other bits, stitch the urethra back onto the neck of the bladder, cut a big hole so they can get the bits out and then finally pull everything out and stitch you up before getting you back horizontal again and then onto a trolley for recovery.
You wake up with quite a headache and an incredibly inflated abdomen, you spend the next few days farting and burping the gas out.

Best wishes,

Georges

Steve1961
Posts: 250
Joined: Dec 2017

like I said before seems  like a small price to pay . Headache gas  bloating .gone in a few days ..very unfortunate that you had a reoccurance Very unfortunate I’m extremely sorry for that ..but if you had no reoccurance like 70 to 80 % do not then I would think that  you would also say that the side effects from surgery were not that ...bad I’m not going to argue anymore ...radiation is bad period ,should never be offered as a primary treatment unless surgery is not an option . Below is what is typical and typical happens more so than not 

These procedures are performed through small key-hole incisions that do not cut muscle. Laparoscopic and robotic prostatectomy offer surgeons unparalleled visualization of the area, thus permitting precise removal of the prostate. Patients also experience significantly less blood loss. Additionally, patients benefit from:

  • Reduced hospital stay after surgery (1-2 days average) and faster healing
  • Less postoperative pain and virtually no need for pain medication
  • Earlier removal of catheter (1 week typically)
  • Shorter recovery time
  • Quicker return to normal activity (one to two weeks) and work (two to three weeks)
  • Smaller "Band-aid" incisions and less scarring

 

men I have talked with really had no problems ...they didn’t even have stitches glue they use ..I really don’t think we need to get to detailed with people that are already nervous and upset  about surgery . Seems like a lot of experiences here were not typical 

ufknkidding
Posts: 42
Joined: Aug 2019

I digitally signed my informed consent for my upcoming 4-hour prostatectomy procedure and was not offered a printed copy. So I asked (and recommend everyone ask) for a printed copy and was told not to be too alarmed by all the risks of the procedure. In the two pages of risks, it included gas being trapped in tissues dangerously affecting blood flow and heart function, stricture, nerve damage, intestine damage, loss of this loss of that, and ends with the last risk being death. I did a lot of research and also found there had been a law suit at my treatment facility for a person who had a prostatectomy who experienced permanent blindness apparently due to a very long surgery (I assume complications and cranial pressure from the head-down tilt for so long).  I asked my surgeon about that case and of course I wasn't told many details but knew it had been years before and with a different surgical team.  Adverse events or side effects can happen with any of the treatment options so I'm not sure it's worth assuming had you chosen a differnt treatment you would have had a better outcome. There are not guarantees so we all have to make an individual decision and manage through any negative side effects or outcomes as best as possible.

Georges Calvez
Posts: 307
Joined: Sep 2018

Hi there,

99.9% chance you will go through it OK, best of luck and bonne continuation!

Regards,

Georges

Georges Calvez
Posts: 307
Joined: Sep 2018

Hi Steve,

Compared with open retropubic or perineal techniques, laparoscopic or robotic techniques are a lot better.
There are some nasty gotchas which can get you in the first few weeks, long term around half of men will recover some erectile function if the nerves are spared although orgasm can be a lot less and only five per cent will be left with a nasty leak after a year.
Radiation can be OK as well, I have found a guy that was very similar to me, he had 60 GYs to the prostate and 40 Gy to the pelvis with sixteen months of ADT and he is looking OK, unlike me he can get a erection as well.
I could turn round and say, instead of the prostatectomy, etc I should have done that but I am here now, no reversing out of it.

Best wishes,

Georges

ASAdvocate
Posts: 117
Joined: Apr 2017

Steve wrote “this may sound selfish Can a moderator please block me posting I need to get on with my life and right now I am stuck and this forum is not helping me at all sorry but thanks .”

When Steve joined this forum, I posted that he had been warned on other forums, and should not be allowed to join here. My post was removed by a moderator who told me it was “not supportive”.

Well, don’t say that I didnt warn you. Honoring his request is in everyone’s best interest.

 

eonore
Posts: 52
Joined: Jun 2017

I agree.

Georges Calvez
Posts: 307
Joined: Sep 2018

Hi there,

I disagree with banning anyone unless they are abusive or in some other way unpleasant.
If Steve wants to go then he should leave of his own free will.
This is supposed to be a forum for adults discussing the predominately adult subject of prostate cancer and its treatment.
Personally I think the moderation in here is too heavy handed sometimes.
I have seen other fora that have turned into the twilight zone after heavy moderation has driven people away.

Best wishes,

Georges

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

I agree with Georges regarding suppression.  Many guys here are suffering from serious emotional trials, and should be allowed to vent.    I do feel that it is counter-productive when a newcomer seeking advice sees posts that scream that "Prostectomy always sucks" or that "radiation always sucks.'  Such posts are medically and statistically inaccurate, but should not be banned.

max

eonore
Posts: 52
Joined: Jun 2017

“this may sound selfish Can a moderator please block me posting I need to get on with my life and right now I am stuck and this forum is not helping me at all sorry but thanks      Also I will be honest I private message almost every newcomer and I warned them about this form and some of the people on here and I always advise them to do the surgery and to stay away from this form hopefully this will get me blocked “

 

His posts, as distasteful as they have become, is not why I think he should be banned.  The actions described in the above quote of contacting new members is why I think he should be banned.

lighterwood67's picture
lighterwood67
Posts: 220
Joined: Feb 2018

I messaged this to Steve a few days ago.  He did not respond.  Steve, I want to tell you a little about me.  I was in the military for 26 years.  I was enlisted. I was in Combat Communications.  I was one of the most decorated enlisted members in 9th Air Force when I retired.  I retired as a Chief Master Sergeant (Top 1 % of the enlisted force structure limited by Congress).  I have seen and done a lot of things in my life and met a lot of people. I have had to deal with (get them pointed in the right direction)  a lot of junior enlisted folks with stress in their lives.  My friend my gut feeling is that you made the right decision even with what you are having to go through.  I would like for you to quit piling on yourself.  You will get through this.  You need to let your feelings out to a professional.  I am not saying this to you to say there is anything wrong with you.  I am saying this to a person who has a common enemy.  This cancer does and can take physical and mental toll on alll of us.  I want you to flip this around and make this work for you not against you.  Peace be with you.

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