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Long term side affects of EBRT

Steve1961
Posts: 249
Joined: Dec 2017

well thought I was heading for mono treatment ..until 3 weeks ago...now it’s it’s either surgury which they feel very confident it will be successful..or it’s radiaTion combo  ..1 hi dose internal and 25 low dose external.havent had the chance to talk to radiologist yet hsve app on 23rd..anyone know where I can find out what exactly are the chances of secondary cancer like bladder or rectal after 10 years due to radiation therapy ..I have read many things ..anywhere from a slim chance to after 12 years almost one inevitable ..I hear u need to be monitored closely grt a colonoscopy every 4 years and your bladder tested every three years ...I mean are these the things they aren’t telling u until after the therapy is done ..I need to know now ..rectal and bladder cancer r real bad and if radiistion can make it easier to get then u know what I will wank it out and hope fir the best ..I have a week to figure this out ..they have told me in  Young men they like to yank it due to the long term side effects of radiation....lol....I thought young meaning 40 or 50 ....no it’s me I’m 57 they consider this young in 10 years I will only be 67 I don’t want another 10 years of wearing a bag always ..I guess they don’t worry about long term when the patient is 65 or so ... anyway where can I find s reput source for these stats of long term side effects thanks 

MK1965
Posts: 178
Joined: Jun 2016

in my opinion, decision would be based on QoL issues:  quality vs longevity. I am risk taker but with prostate Ca I did not have chance to excercise it. Followed wrong advice which I deeply regret.

My focus is QoL. What is the use of 25-30 years of miserable life when 5-10 would be sufficient to experience all what I want

Still, 18+ months post surgery, I wish I did not have one. I do not see anything that I am better of with having surgery done.

MK

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RobLee
Posts: 259
Joined: Feb 2017

Steve, I think you were headed in the right direction initiallly. Surgery and radiation both can have lasting side effects, some worse than others. Your comment about "young" men having many decades ahead of them and there being a greater chance of radiation damage appearing seems to be valid... or at least it's one we hear a lot. What I've observed is that radiation is often chosen by guys who 1) are afraid of surgery in general, 2) have other health problems that might preclude surgery, or 3) are afraid of losing sexual functioning.

I've spoken with guys who cited each of these specifically... so I hear the same things a lot.  I suppose it comes down to what scares you the most. Surgery didn't scare me. I have had radiation, and I am living with side effects from both.  I don't believe there is a "wrong" choice here.  The worst thing you can do is to be so scared that you just freeze up and don't do anything.

Clevelandguy
Posts: 460
Joined: Jun 2015

Hi Steve,

First of all both surgery & radation have side effects, but they are different.  From what I know I agree with a lot of your radation concerns but surgery can have sometimes long lasting side effects also.  Surgery did not go well for MK but I feel it went OK for me.  Had surgery back in 2014 and my PSA is still undetectable.  I have no ED and I still use a light pad liner in my underwear to catch the occasional drip but I am OK with.  I took the approach that if surgery did not get all the cancer then I would go with radiation as a second attack.  But if the surgery does work then no side effects from radiation to worry about ever.  It your choice based on the various sources you can study as to choose radation or surgery.  Choosing a good facility and great doctors improves you chance of having a better outcome via surgery or radation.  The American Cancer Society has lots of good info on the side effects of both surgery & radation. Also the manufactures web site for thing like Cyberknife also have side effect info.   Good luck in your choice.

Dave 3+4

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Yes, surgery and radiation can both have side effects but, base don what I've read and heard here, the "side effects" from surgery are more immediate and can be far more devastating than anything that might happen years after treatment w/radiation. 

Most of the information that I've read concerning the side effects of radiation were published years ago when the delivery of radiation was far less accurate and precise than it is now.  The reason this is important is that the more accurate and precise the delivery of radiation the fewer side effects that are likely to occur. 

This is especially true w/SBRT which can deliver radiation to the sub-mm level, which all but eliminates the possibility of collateral tissue damage during treatment which might result in damage to the rectum, bladder and/or urethra (which are the most common radiation side effects).

Cyberknife, which I was treated with, is one such method of radiation delivery which has been in common use for over 10 years now.  I was treated 7 years ago w/o any side effects (short or long) and 5 yr studies have not reported very high treatment success and few effects.

See for example: https://www.itnonline.com/content/cyberknife-system-provides-long-term-disease-control-prostate-cancer-patients

 

 

 

 

ASAdvocate
Posts: 116
Joined: Apr 2017

The only types of radiation that should be considered are SBRT, HDR-BT and PBT (protons). Everything else is becoming archaic. I am a member of six internet forums and an in-person PCa support group. Just off the top of my head, it seems that 80-90 percent of the treatment complaints that are past one month, involve surgery. Do we have 30 year studies on those three types of radiation? No, of course not, they only have maybe 10 years. But, those tecnologies are amazing focused to avoid healthy areas, and there are various shielding methods available, that I would not hesitate to have any of them if I ever need to leave AS.

Clevelandguy
Posts: 460
Joined: Jun 2015

Just an added note, Swing is partially correct but there are a lot of people who post here that have had problems after radiation treaments and not just ten years ago.  Both surgery & radiation will give you side effects, some recoverable some not.  Just make sure you study wisely and pick the treament that suits your life & conditon with your cancer.  If you want I can post several recent posts of people with problems after radation treaments.  Neither surgery or radation is a walk in the park and both have collateral damage that they leave you with.

Dave 3+4

hopeful and opt...
Posts: 2226
Joined: Apr 2009

ssw

"Yes, surgery and radiation can both have side effects but, base don what I've read and heard here, the "side effects" from surgery are more immediate and can be far more devastating than anything that might happen years after treatment w/radiation. "

During the last 10 years I have not only posted here regularly, but I have also attended various local support groups on a regular basis where I listened to lecturers about the various treatments. I have also read extensively on this subject.  The information that I have come across has brought me to the conclude the same as you. You are right on target.

Additionally at these support groups , time and time again I have come across men who were despondent, since they suffered from the side effects resulting from surgery. This was not true of radiation, especially SBRT, the latest and most precise. I have read studies about men who have had SBRT, and the side effects that were found were minimal.

Clevelandguy
Posts: 460
Joined: Jun 2015

Yes you are right H&O, can be is a very powerful word.  One guy on this forum(can't remember his name) was back up with no ED or leakage after like 6-8 weeks, Vasco had no leakage after they took out his cath, remarkable.  Some other people have had life long severe ED & urine leakage. Surgery effects are immediate but usually get better with time where radation is the opposite with some side efects showing up years later.  The side effects depend on the amount of cancer, location of the cancer, surgeon & oncologist experience and hospital equipment for both surgery & radiation.  That's why people need to study both radation & surgery along with the possible side effects pick the best doctors and facilities and make their own personal choice.  I have listed below a few of the people that post on this forum and their problems with radiation treaments.  I am sure that you can find just as many that have had bad outcomes from surgery also.  Like I said both forms of treaments have side effects, sometimes very serious, sometimes not.  Study & choose wisely.............................

Rob Lee Jan. 2018: I completed eight weeks of radiation last October and the side effects are just now finally wearing off, specifically the proctitis that happens with some men. Diarrhea started my second week and by the end of Tx I was bleeding rectally. I don't know exactly what you mean by abdominal pain, but for many weeks I would go all day feeling like I had to defecate, and often would several times a day. Often there was a lot of gas too.

Max Jan. 2018:  I asked him about a friend who had received radiation years ago and later had to periodically have his colon cauterized to stop bleeding.  The surgeon told me that this was extremely common, he had done many such cauterizations on men who had received PCa radiation over the years.  

Vasco Jan. 2018: Radiation treatments for PCa typically create scar tissue in the urethra and bladder. In most of the cases these areas burst into wounds causing bleeding till it repairs by itself. There is no fixed period on occurrences and many guys experience bleeding many years after treatment. Doctors call it RT late side effects

Bluepac6 Feb 2018:  The radiation I 2011 had damaged my urethra and bladder beyond repair and my only choices were to wear a catheter bag out my penis the rest of my life or have bad part of urethra removed and my bladder removed.

Joesephg Feb 2018:  My condition was diagnosed as hematuria, and my Urologist advised that this is not an uncommon occurrence for people who have received radiation therapy near the bladder. 

Las711 March 2018:  Just had 39 tretments Prostate Radiation 4 months ago.. All went well PSA now at .08.. but I now have Radiation Proctitis.. Lower bowel area.. Dealing with it using Surcaltate enemas.. 

 

Dave 3+4

ASAdvocate
Posts: 116
Joined: Apr 2017

Dave, one thing I've never heard, after reading and hearing thousands of post-treatment complaints, is someone who had radiation as a primary treatment, wishing that they had had surgery instead. 

MK1965
Posts: 178
Joined: Jun 2016

ohh men,

i missed this good discussion and all excitement

Had surgery, experienced lots of bad in my 18+ months post surgery. My QoL is on downhill ever since surgery.

I wish I never had surgery neither any other form of treatment. I was incidentally diagnosed so it was just beginning and I could easily enjoy another 10 years of good life before treatment would be needed even with my 4+3 after biopsy.

In the sixties, I would care less about ED, not same way as it is in my early fifties.

I totaly agree with H&O. Surgery SE are very harsh and hardly recoverable. 

Radiation would be my choice of treatment because it would leave me with better QoL in all regards.

MK

Clevelandguy
Posts: 460
Joined: Jun 2015

Maybe a few of the people above that I quoted might wish that, if they are online they can chime in.  But its not about that or which is the best choice cause there are none.  Radiation and Surgery both have side effects, short term & long term.  Understand them and choose wisley.  If there was a treatment that had no side effects we all would have taken it, but there is none.

Dave 3+4

Steve1961
Posts: 249
Joined: Dec 2017

It’s called space OR anyone heard about this apparantly  a gel that they want to inject between my rectum and prostate. .05 inch gap between the prostrate and the rectum protecting it from harmful radiation it hardens and slowly dissolved over 3 months and is passed thru your urine 

ASAdvocate
Posts: 116
Joined: Apr 2017

SpaceOAR has been around for a year or two, and is used to shield the rectum from radiation. Many radiation centers have started using it. It's like that expanding foam spray that's used to fill small cracks in houses, except that it harmlessly biodegrades.  I have read that it has not proved a difference in SBRT, probably because the accuracy of that treatment does not need insulation.

Old Salt
Posts: 720
Joined: Aug 2014

Some rad oncologists recommend Space OAR, but others don't think it makes a difference. I suppose this depends on the actual radiation plan and the radiation technology used. 

If your specialist does want to use it, I would go along. If not, let it go. It will save some money.

Steve1961
Posts: 249
Joined: Dec 2017

Too much information I watched a video on that space OAR no biggy but they stick a big *** needle right into the apex of the prostrate to numb it     really right into the apex where the tumor or tumors are.  Not good in my opinion with my luck  they would inject it right into the tumor then what damnnnn I’m tired of seeing and reading all this bad stuff 

Tech70
Posts: 53
Joined: Nov 2017

When I had some erroneous pathology results that had me considering SBRT after being on AS, I researched Space OAR.  To me, it just seems logical that it could be useful.  The prostate sits right against the rectum and this separates the two by about 1 cm.  Seems logical there would be less chance of damaging the rectal tissue

Steve1961
Posts: 249
Joined: Dec 2017

I know everyone here means well and all info is appreciated veryyyy much...but it seems like this place is kinda like turning on the local news station...it seems like 95% bad news and only 5% good news.....I know most people come here looking for help with something that went wrong ..I get it ...butttt there has to be tons of good results out there ...we just don’t hear about them here ...but we will hear some soon  and it will be from me ...thanks everyone 

Old Salt
Posts: 720
Joined: Aug 2014

The fact that so many are responding means there got to be good news. 

It's hard to contribute if one is six ft under...

Clevelandguy
Posts: 460
Joined: Jun 2015

Hi Steve,

Sorry to sound doom & gloom but yes there are plenty of good results with radiation & surgery.  Just have to be ready for both sides of the story.  Just like when a women gets pregnant they want to know how hard labor is and how much it hurts & not about how nice it is to hug your newborn.  Kinda of human nature to want to know all the sides, the good, bad, and ugly.  I think there is a movie title in there somewhere?

Dave 3+4

Steve1961
Posts: 249
Joined: Dec 2017

wow just when I had my mind made up ...surgury is kinda sounding better I mean really what long term side affects from surgury are there...ED who cares incontinance  my dr said I would most likely regain all of that ...what else is their to surgury ...I mean man with radiation u can hsve blood in urine ,in stools ,uretha damage ,rectal  damage ..may not be worth it ..really. I’m flipping s coin ..to many what ifs ..

Grinder
Posts: 441
Joined: Mar 2017

Question... how many Davinci RPs were performed versus how many SBRTs? You can compare the greater number of incidence of side effects in Davinci RP ONLY if there is an equal number being performed. Judging from stats I have seen there are FAR more Davinci RPs being performed.

I quoted an AARP study that gave percentages instead of raw numbers of side effects.. AND most importantly, it distinguished between all other surgery types and nerve sparing Davinci surgery...

Prostate-cancer treatment causes ED because the nerves involved in erection border the gland. Surgery often cuts these; radiation frequently damages them.

A special surgical approach called nerve-sparing prostatectomy can push your ED risk below that of radiation. Studies report "functional" erections in 60 to 80 percent of men who have nerve-sparing surgery. 

Just as Cyberknife is acclaimed to improve targeting, so does nerve sparing improve recovery odds in RP. And referring to older cases of radiation treatments having more reported side effects, so does RPs various older procedures... Open RP and laparoscopic non-sparing RP.

Quoting Cyberknife stats and comparing them to ALL types of RP, and not taking percentages into account is misleading.

We keep having this conversation over and over again. There are many complaints of side effects from all types of RP, but there are many many more successful NERVE SPARING Davinci RPs that do not get reported than those with disastrous side effects.

Steve... you would be a fool to listen to me for a recommendation either way. You need to gather as much real information, consult with your doctors, and seek out the best and most experienced professionals available.

I would rather have an experienced best available radiation oncologist perform SBRT, rather than a newbie inexperienced surgeon cutting his teeth during my RP.

Likewise, I would rather have an experienced surgeon with an unassailable record of minimal side effects than a rad onc experimenting with SBRT and I'm his training pigeon.

ASAdvocate
Posts: 116
Joined: Apr 2017

Grinder, Nerve-sparing RP has been around since 1982. It has been the "gold standard" for ORP, LRP, and RALP for years. Nevertheless, it very often does not work. I have read many posts by men who had it and were impotent, claiming it to be a "fraud".

Now, obviously, RP also works out well for many men. I have read their testimonials too. 

Yes, RALPs are about 85-90 percent of the PCa surgeries beimg performed. But, the times they are a changin', because now the percentages of men having RP and having RT are exactly the same. Both at 37 percent. Previously, surgery was about 60 percent. But, the skyrocketing recent acceptance of AS cut exclusively into surgery's clients.

Steve has enough info already to make his choice. We are just adding to the noise. Hopefully, whatever he ends up choosing will provide him a good outcome.

Steve1961
Posts: 249
Joined: Dec 2017

nay I ask where you found these stats about the percentages RP and radiation my wife is curious an so am I thanks 

ASAdvocate
Posts: 116
Joined: Apr 2017

I read it about a month ago,and think that it was an analysis written by Allen Edel, a well-know PCa blogger, from a very large scale study. Of course, I can't find that I bookmarked it, so, now I've got some, maybe a lot, of searching to do. But, it is out there, and I will find it for you (and bookmark it this time).

ASAdvocate
Posts: 116
Joined: Apr 2017

I'm tempted to keep searching all day for where I read those stats, especially since I can "see" the page in my mind's eye. But, I have to pack for a trip and move on. Sorry.  But, consider this, the rate of men choosing AS has gone from less than 10 percent a few years ago to 30+ percent overall now. At my large local hospital system, the chief urologist now says its 50 percent. Well, those increases had to be at the reduction of another choice, and that choice would be surgery, as that is what the diagnosing urologists typically recommended. 

 This is not the exact link, but supports the huge recent increase in AS:

https://www.msn.com/en-us/health/medical/more-men-with-low-risk-prostate-cancer-are-forgoing-aggressive-treatment/ar-AAxkdyQ?ocid=spartandhp

 

Steve1961
Posts: 249
Joined: Dec 2017

SBRT is out of the question not enough data on it yet fir me ..will talk  to radiologist tomorrow ask what short term side effects can I expect with combo radiation .if I can handle it I will do it if not I will do surgury .i hsve them both booked ..I will cancel one ..radiologist has been at it fir 23 years  done over 3000 hdr brachytherapy ....surgeon has done over 6000 including 2000 robotic .been there 32 years i trust them both ..both from UCSF ...not #4 in the country fir nothing thanks to all ..wish me luck 

mstoriop
Posts: 37
Joined: Dec 2016

Hello Steve.  I do not post much but read the forum frequently and respond if i feel i can offer a thought.  I know you have been on this site for awhile and not only have you done extensive research you have been the beneficiary of quite a few very astute members thoughts.  Many of the same assisted me.  My journey is documented elsewhere and can be found if you would like.  I will not begin to offer my opinion to you as to your decision on treatments.  As everyone continually says it is your choice and will be fine for you.  What I would offer is my opinion that there is some very good data, at least to my thinking, on SBRT.  Dr Katz has published 5,7,anf 9 year studies and I saw somewhere that a 10 year study is coming.  There are also some studies comparing the effects of SBRT along with other radiation therapies.  What I found interesting in my thought process to Cyberknife was the relative linearity of stats in the Katz studies.  While the control population diminished for "normal" mortality reasons, the biochemical faiure rate remained low.  The late grade rectal and urinary toxicities are virturally unchanged and low.  I guess you could say that for the almosr 10 years of study the regression lines for the main indicators are pretty flat.  If your reason for discounting SBRT is only because of insufficient data I personally did not see that in what I found.  I wish you well in your decision and treatment I'm sure you will come out on top.             

Grinder
Posts: 441
Joined: Mar 2017

"Many factors are involved in the return to sexual function following surgery, including age of the patient, having an active sexual partner, whether one or both nerve bundles were spared and amount of time since surgery. When we evaluated preoperatively potent men who underwent nerve-sparing minimally invasive radical prostatectomy, we found that 48 percent of men who had both nerve bundles spared reported successful intercourse at six months and 72 percent at one year following surgery with or without the use of oral medications (e.g., Viagra or Cialis). "... John Hopkins

The issue here is "nerve sparing". If one or both nerve bundles were cut or damaged, regardless the reason, there was no "nerve sparing".

If an inexperienced surgeon damages nerve bundles during surgery, he can call it "nerve sparing" all he wants to. He can call it Dr. Grinder's Super Duper Nerve Sparing No-Risk Fool-Proof Prostate Removal Service if he wants to. I can name my cat "Fido" but he still wont bark at strangers.

All I know is,  despite my prostate was still 197cc compared to normal 25cc, my surgeon said he could spare both bundles and expected them to recover over time with assistance by the vacuum pump. And almost two years later Stubby is rock hard now. Admittedly, he is Stubby now... so I hope Steve is taking the 1-2" length reduction in to account when comparing treatments.

 It depends on what the surgeon says... and it sounds like both the surgeon and the rad onc are very experienced... so I would listen to what he says about prognosis.

MK1965
Posts: 178
Joined: Jun 2016

Either definition of erection was one of those that that was minimalized or they were cherry picking patients, 72% of patients having sex at 12 months is to inflated and gives false hope to those who are looking for surgery as their primary method of treatment.

Reality is way different.

That is like winning the big lottery. Every body has chance (if they play) but, just a few are winning big.

In RP everybody is winner, incontinence, impotence , any combinatoon and anything in between.

Someones is winning less, someones more, but everybody wins.

No such lottery in the world where everybody wins.

MK

Steve1961
Posts: 249
Joined: Dec 2017

all this talk about the woody.i could care less about it .i just don’t want it to come Back .i dont see anyone on here that only did the combo radiation where it hasn’t come back . Makes me nervous..

Clevelandguy
Posts: 460
Joined: Jun 2015

Got to agree with you Steve, my main concern was which method would get rid of the cancer as a top priority and then what kind of possible damage would it do to my body.  Everyone has to make there own choice and then live with the consequences good or bad.  There is no right or wrong, better or worse treament, just pick one and live with the known side effects.  It's your choice & your body.

Dave 3+4

Grinder
Posts: 441
Joined: Mar 2017

The quote is from the Brady Urological Institute at John Hopkins.

https://www.hopkinsmedicine.org/brady-urology-institute/index.html

It only mentions up to one year in the study. As most urologists will tell you, ED recovery occurs mostly one to two years, as was my case. That would make the percentages even greater for recovery.

Recovery is defined as sufficient erection for penetration during intercourse.

Grinder
Posts: 441
Joined: Mar 2017

Steve... this is a link to the Brady Urological Institute at John Hopkins that gives a VERY detailed exposition on what to expect before, during, and after Robotic Prostatectomy. The amount of information on this site is considerable...

https://www.hopkinsmedicine.org/brady-urology-institute/specialties/divisions-programs/minimally-invasive-surgery/prostate-cancer/nerve-sparing-robotic-radical-prostatectomy.html

This is a good site for anyone considering maximizing their outcomes after RP.

However, it is still not a substitute for your own doctor's advice... and only covers the immediate post-op preparations.

graycloud
Posts: 38
Joined: Jan 2018

Steve:  My husband is almost 3.5 months post surgery for a robotic prostate removal.  He went in with Gleason 9, apprehension, fear, etc.  His surgeon and specialists were with Memorial Sloan Kettering in NYC (we live in the SE).  Researched around the world.  We believe we ended up at one of the top prostate cancer centers in the world.   He is doing fantastic.  Very minimal ED side affects - in fact, he doing well without the "little blue pills" now.  He's improving so much in the bladder area. He's only leaking now with exercise.  If you decide on surgery, be sure you have taken every precaution to get your body ready pre-surgery.    Exercise, good healthy diet. Walking is the gold standard for increased blood flow to the pelvic area pre-surgery.  Does your prostate group have an ED specialist to meet with pre-surgery?   MSK has the top ED specialist in the nation, and he has been a blessing for my husband's recovery.    I don't know how long it's been since you had your biopsy, but you need a minimum of 120 days for the prostate and nerves to heal from the biopsy.  The nerve bundle needs to be "healthy" presurgery for the best outcome.  Also, if you decide on the RP, start pelvic floor physical therapy before surgery, and continue after surgery.  My husband started 3 weeks post surgery, and his PT group are literally re-writing their prostate PT guidelines based upon his excellent recovery.  We are one of the "good outcomes" with robotic prostate removal.  He was so negative pre-surgery about the whole process.  Everything he read was negative.  But he has worked hard on his recovery, continued to improve his physical health, and he's literally in the best shape of his life.  As his oncologist/surgeon said, recovery after RP is a process.  The speed and endurance is up to you.  I wish you the best in whatever decision you make.  

Grinder
Posts: 441
Joined: Mar 2017

After reading graycloud 's post, I wish I had started recovery BEFORE the operation... maybe my recovery period would have been a lot shorter.

My surgeon gave me a lot of good advice, but it was mostly all post-op advice. And I didnt know about this forum till long afterward when I asked the guys about "use it or lose it". 

The only caveat I have is watch out for a different urologist than your usual urologist and the surgeon... The clinic assigned me to a urologist that "specializes" in ED. What he specialized in was taking your money when your recovery is progressing just fine , because my insurance paid for everything BUT ED related issues... even if they were the result of the PC operation!

So I canceled that pretty quickly. I was way more concerned about incontinence recovery... the ED recovery was just a bonus anyway.

Steve1961
Posts: 249
Joined: Dec 2017

i just seems like to me that the majority of people opted fir surgury ...vast majority...I hate being the minority ...there has to be a reason fir it .even though the radiologist I am seeing is far more booked than the surgeon ......hmmmm by almost 2 months 

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

A lot of guys choose surgery first and leave radiation for a backup plan (such as I did) if surgery can't get out all of the cancer. Yes, yes, I know the radiation advocates say that there are "options" after failed radiation... focal ablation and cryosurgery and even salvage surgery, but these are not mainstream treatment plans... otherwise more guys would certainly choose radiatin first and leave something else as the backup plan. In reality, most guys just want to get the prostate completely out of there. It is not just a "knee jerk" reaction as some say.

Granted, there are cases when surgery is not practical, and some cases where radiation is not the optmal choice.  Talk with some other cancer survivors (not just prostate) and in many cases they required to undergo surgery, radiation and chemo... all three or in many cases two. Same goes in this case.

Chuckect's picture
Chuckect
Posts: 45
Joined: Jan 2018

was not d x'd with stage 4 metastatic prostate cancer until i was 79.. my options were chem,zytiga,xgeva, lupron,prednisone.. didn't have to wory about ed or side effects.. the only problem is that my PSA seems to jump up above 50, but it's  always when i get my nose in my bong and to much bourbon in my belly.. so study hard keep an eye on effects stay active make good decisions and enjoy life to the max..

the hair is pre-chemo and i'm 2 years into this cancer stuff and still alive -- good luck everone

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

What the general public doesn't know about, and many (dare I say most) newly diagnosed victims of PCa aren't aware of, is that prostate cancer is two very different diseases. Once it goes beyond stage T3b (mine) it becomes a totally different disease with totally different outcomes. Stage 4 prostate cancer is essentially incurable.

Most guys who fret over treatment, even fight about treatment choices, have some G6 or G7... forgive me if I step on anyone's toes here... cancer that was easily diagnosed by DRE or on the first biopsy, have time to be indecisive about treatment, and even gripe when the outcome of treatment comes up short of what they expected.

Then there are the "in between" guys, maybe like me, G8 (4+4), maybe (4+3) or (4+5), with a solid tumor that took forever to get diagnosed, dispite certain warning signs like steadily rising PSA. We are told that we are not even an eligible candidate for certain "popular" forms of radiation treatment, maybe even beyond surgery. Or if we have surgery, we are told that we will require radiation and in many cases, with HT added. And if there is SVI, LVI or positive nodes involved, it can quickly jump to stage 4.

Which is where you are, Chuck. You probably had some warning signs a few years ago, but got the medical runaround. Standards of care and conservative medical ethics dictate that "it isn't cancer til they know that it's cancer". And it doesn't take very long at all to get there. It just breaks my heart when I read of other guys who had a borderline PSA (around 4) and maybe missed a PSA test one year because, lets face it, we have a life, then suddenly the PSA is in the 20's or fifties or hundreds, and the docs are saying why didn't you do something about this sooner. And all we can do is grit our teeth and say to ourselves "I tried, believe me, I tried".

So then you're at stage 4, and there isn't much that can be done about it. Prolonged HT can keep you alive for a few years, until the cancer becomes castrate resistant. The docs try to vary the drugs, like when Scotty would modulate the shields, but eventually the shields are down to 20%. The cancer is so widespread throughout the body that surgery is out of the question. Radiation spot treatment can zap individual tumors where they appear, but that's mainly to reduce the endless pain, as whole body radiation would be counterproductive (they experimented with that in the fifties and sixties).

So you're left to just accept your fate. Live life as best you can. Stay high if that helps you face the inevitable. Stage 4 metastatic prostate cancer is incurable. Some guys, but very few, stay alive for a decade or so on HT and chemo, but life is far from comfortable. And with comorbidities, like Chuck I know you're in a wheelchair, and other diseases that pile upon the frail, it's hard to call this living. And now because there are so many able bodied people who have too much time on their hands, law enforcement is trying to take away the one thing that can help during the final stage of life... because of a widepread "opiate crisis."

Chuck, I'm glad you have such a pleasant attitude after all that's happened to you, and that you are willing to contribute here in the forum and in the chatroom. And to the guys who like me can only realize that "there but for the grace of God go I", we can see that there were probably only a few months between stage 3 and stage 4. And the guys who get their cancer successfully treated and life goes on, but you get to gripe about it, what can I say? Consider yourselves very fortunate.

 

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hi, Steve. My husband was diagnosed this past December with PSA 34 and Gleason 10. All biopsy cores were between 45%-80%. Because of other health issues (hypertension, diabetes, episodes of congestive heart failure) and his age of 65, doctors, including a review by the tumor board, concluded that ADT and EBRT are the only way to go for him. He has locally advanced PCa with 3 nodes enlarged. 

I don’t envy you all the choices you have to make. Perhaps the radiation oncologist was being cocky, but at about age 50, he says he has seen no bowel issues post radiation since he was in residency. He said urethra strictures come with brachytherapy and not EBRT. My husband has an “it is what it is” attitude and says he can’t worry about worst case scenarios since his treatment options are limited. When I asked about Space OAR (Organ At Risk) the RO agreed to it despite having seen no radiation proctitis in his practice. The Moores Cancer Center has a new Halcyon to deliver the EBRT. Paul had his first session today and all went well. As for the future? Que sera sera.

As for SpaceOAR, Paul told the medical team that the last time he had asssumed that position was when the aliens had abducted him. The young female Resident thought he was stoned. Nope. BTW, he said the hydrogel placement was no big deal. I am not married to a macho guy, so please don’t worry about that should you choose it. My best to you. I hope you can clear your thoughts long enough to hear your intuition guide you. 

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