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Intofire56's picture
Intofire56
Posts: 2
Joined: May 2017

Hi All, what a great resource.  First the stats----PSA   Nov '16   5.17,   Mar '17      7.98,  April '17    8.32,   Biopsy --Left Sec "A" (right side), 3mm,  13% of surface area of core biopsy,   Gleason 6 (3+3),   Sec "D" (next to "A", Atypical Small Acinar Proliferation)

Follow up with Urologist April 17... 

As expected, I'm  looking for advise and persons with common clinical numbers and regarding procedures done, side effects and where they are now health wise.  

Not maybe relevant, but I'm here because I demanded a PSA from GP not interested in doing it, with my history regards to 9-11, I didn't think that the industry using DRE was good enough to screen for cancer.  My last PSA Test was in 2009 @ .64, mean while, DRE's leading up to now, per doctor -were not abnormal- and saying the recommendation is only DRE.  So, while trusting the doctor and the Industry, here I am, late in the game, but better position if I just didn't  open my mouth!

Thanks for reading,

Rick

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi Rick,

With a 3+3 you have the time to look at all the various treaments & pick the one that is right for you.  Surgery & Radiation are the two major paths most people follow.  Study all the treaments and their side effects and they all due have side effects.  I had surgery almost 3 years ago & have had a undetectable PSA ever since.  I have very minor Ed and very minor urine leakage after 3 years.  ED & Urine leakage usually occur with all treament plans.  Surgery side effects are usually up front and get better over time while radiation is just the  opposite.  Each peson will vary with their recovery/symptoms based on how severe their "treatments " were so there is no one answer on how long it will take to recover.  Various medicines can help with ED recovery or urine leakage.  It's up to you & only you to decide which treatment method is best for your life.

Dave 3+4

Mulhaley
Posts: 12
Joined: Mar 2017

Hi Rick--

I agree that the PSA test, while imperfect, needs to be administered as part of a wellness exam, especially for those of us over 50.  Mine crept up over four or five years, and my urologists monitored it until I got to 6.3.  At that point, in March, a biopsy confirmed my cancer.  Without that test, I wouldn't have known I had cancer---my DREs were all unremarkable, and there was no pain or discomfort.  Had 59 radioactive "seeds" implanted this morning, and will also do a course of external radiation, as my Gleason score was 4+3 and I want to treat a slightly wider area than the gland alone.  This by the way was not the course of action my urologist recommended--he wanted me to have surgery.  I read everything I could and dug into this forum to learn as much as possible before making a decision, and the therapy route I chose felt right to me.  Clevelandguy is correct in saying there are a few different ways to go, and you have time to research, ask questions, and choose what makes the most sense to you.    While I suspected I had the disease for years, it was still a shock to hear it confirmed, and it takes some time to wrap your head around it and deal with the emotional component while trying to make the best rational decision.  The men who participate in this forum are generous with their sharing and advice, and it's enormously helpful to have conversations with guys who have experience and to hear first-hand the results of the various treament paths.   I know of no treatment choice that has no possibility of side effects like incontinence, ED, and urinary/bowel problems.  I know I'm going to have to deal with side effects to some degree--I'm hoping of course I catch a break with regard to the aftermath and they aren't too tough to manage.  The severity of these problems seem to vary from person to person.  On the whole, though, there's very good reason to be hopeful and optimistic about the outcome. You will have to do your research and find out which path makes the most sense for you and which surgeons or radiation oncologists have the best scorecard in your area.  Good luck! 

 

Mike

Age: 61

Dx March 2017  PSA 6.3  

Currently receiving LDR brachytherapy combined with external beam radiation (known as "ProstRcision") at Radiotherapy Clinic, Georgia.

 

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

Nine years ago, I was diagnosed with two cores out of twelve with less than 5 percent in each with Gleason 3+3=6. Since that time I have been in an active surveillance program, simply monitoring my disease. I have not had any radical treatment such as surgery or radiation which can have major side effects. This is considered a valid treatment decision. I am monitored at a major center of excellence in Los Angeles. I am hopeful of dying with with disease without treatment, or if in the event that my cancer grows, because of the careful monitoring that I receive, I am confident that I can receive treatment that I would have when I was diagnosed.

So far, during the last nine years, I have enjoyed my life, and have not experienced any side effects from treatment....which is considered a success.

To see exactly what has been done to monitor me, and the results of chick my name on the left of this page...There is also other pertinent information about Activr Surveillance in the summary that you will see

Feel free to ask any questions that you wish

Best,

H

 

Best

Intofire56's picture
Intofire56
Posts: 2
Joined: May 2017

...well received and greatly appreciative your open dialogue...I will continue to check this Post and research the othe Post on here to gather whether information I need to throw at the Urologist tomorrow. 

TobyVT
Posts: 4
Joined: Nov 2016

Hi Rick

Just completed CyberKnife Surgery (radiation) in January for Prostate Cancer. Urologist was big on surgery; radiologist big on radiation. Both agreed that there was not enough research or data to indicate the best and most effective treatment so they left it up to me. Did a great deal of online research (always be suspect of the source - CyberKnife promotes itself on the web; Urologists have less regard for radiation, etc.) Finally met with my GP and asked him what he would opt for. He would opt for radiation as the surgeon said there was little chance he would be able to save the nerve endings controlling erections. My biggest concern was not sex but being incontinent the rest of my life. I opted for the less invasive treatment of radiation (5 days of 45 minute high dose radiation) but it really is a crap shoot. The actual radiation sessions were easy. It was the biopsy, CTScan; 2 MRI's; Enema prep before each radiation, etc. that were the worst part. I had a low PSA to begin with 4.1. But the biopsy confirmed cancer in 6 of the 12 samples, one being 90%. So they both argued I was not a candidate for Active Surveillance.

Have occasional leakage but am probably contributing to it by high intake of coffee and diet coke. Next PSA test is in August to see if it worked. Radiation is less conclusive than surgery so I will be tested for several years.

Take your time and do the research. You have to live with your decision without regrets.

Good luck.

Old Salt
Posts: 720
Joined: Aug 2014

I wouldn't say that radiation is less conclusive than surgery; too many reports from patients on this Forum and others who underwent surgery but had to have further treatment, sometimes several years later.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Not so.  I had CK treatment (too) in 2010 and am cancer free.  That's as conclusive as it gets. 

Haven't heard of anyone who was treated with radiation that had to be treated with radiation again.  I'm sure there are a few men who had to do so but I just haven't heard reports from them.

However, the number of men who had surgery and then later had to have radiation as a followup because of a recurrence of the cancer due to a FAILED surgery is remarkably frequent.  Can't count how many men just here on this forum have reported this.

So, if any form of treatment is "inconclusive," it's surgery, not radiation.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

OP, if you haven't seen it yet, here's the sticky that I post when any newbies join the forum asking for info about their options.  If you have a low grade prostate cancer, you have a lot of time to decide what treatment to choose and, if it is contained in the prostate, there is no better treatment in my opinion than CyberKnife.  However, you need to make your own decision about what choice of treatment you'd prefer and this sticky lays out the main choices that are available to you.

The following is a duplicate of one that I have posted in various threads on this forum to give men newly diagnosed w/lower risk prostate cancer (Gleason 6 or 7) an overview of the treatment options available to them.

 

Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cncer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

The following is my response to other men who asked for similiar advice about the treatment choices avilable to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

 . . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

 2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

 3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

 4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

 4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

 I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

 So, for obvious reasons, I highly recommend that you consder CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

 Good luck!

TobyVT
Posts: 4
Joined: Nov 2016

Thanks OldSalt and Swingshift worker.

Good news to hear that you went with CK and are doing well. As with any cancer or disease, the uncertainty of what is ahead is often more difficult than the actual treatment.

Am finding much more comfort and helpful information on this site than from my oncologist.

Thanks

 

Clevelandguy
Posts: 462
Joined: Jun 2015

Hi,

Glad to hear you are dealing with your cancer, Radiation or Surgery both offer about the same end result.  From what I know about radiation it will take a few years for your PSA to drop to undetecable as the prostate tissue dies from the effects of the radiation.  Both radiation & surgery will leave you with side efects, ED and/or urine leakage to some degree. There are alot of people on this board that have been treated with raidiaton and had to do other things to put their cance into remission, same thing with surgery.   Radiation is not a cure all, if so we would have all done it.  Just with radiation or surgery both methods either work very well or somewhere in between.  The between would need some type of additional treatment.  Good luck and keep us informed.

Dave 3+4

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I've never said that radiation is a "cure all" or without side effects but those side effects pale in comparison with the more commonly reported disasterous side effects of surgery. 

If follow up treatment is required (which it seldom is), it is usually simple to re-administer radiation to the affected area unless the initial treatment was LDR BT, in which is yet another reason not  to choose LDR BT for treatment in the first place but not a justification for choosing surgery over radiation.

Yeah, there can be urethral, rectal and bladder damage and there can be urinary and erectible problems caused by improper radiation treatment but that was more common in the past when the accuracy of radiation delivery was less precise.  

Frankly, I've never heard of a radiation patient who needed to be fitted with an AUS or penile implant.  I'm sure there may be men who have had to have this done following radiation treatment but the only reports I've read arre from men who had a failed surgery.

Also while the "cure" rate of surgery and radiation is reportedly the same, it's not just the result but the process that is important. 

The quality of life for a patient following surgery during "recovery" is so much worse than for radiation that you really have to question why doctors are still recommending it in the face of the availability of much better treatments such as CyberKnife.  Even IMRT, while requiring more treatments, is better in terms of side effects and quality of life issues.

Also, FYI, you will NEVER achieve an undectable PSA level following radiation treatment.  It's impossible because even though the all of the cells in the prostate have been effectively destroyed by radiation, the protein identified by the PSA test is still produced in small amounts that are beyond "non- detectable."  

The important thing is that the cancer be stopped and radiation more effectively does this IMO when you factor in the side effects and quality of life issues.

As you all know already, I'm passionately opposed to surgery; have been since the day I was diagnosed and read about its potential side effects. 

However, I do believe its each man's right to choose surgery if he thinks that it's the right choice for him BUT to minimize and diminish the severity of the potential side effects of surgery and to equate them with radiation is a serious disservice to the men newly diagnosed with PCa who log on here for candid information.

This is not an issue that requires "poltical correctness" or any effort to treat the surgical option "fairly."  The TRUTH needs to be spoken so that men know going in what the risks are if they choose surgery and I have no problem plainly stating those risks whenever there is a need to do so.

I have been doing this since I first joined this forum almost 7 years ago now and I plan to continue to do so as long as this forum exists and I am still alive because I still too often read statements made by people here trying to play off the seriousness of the side effects of surgery.

The risks of those side effects are real and can be life alterting and the men who log on here deserve to know that because they decide which method of  treatment to choose.

 

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

Well said.....the side effects from surgery are greater than any other active treatment. The results from radiation are better now, than in the past with significantly less side effects. The side effects from radiation is significantly less than surgery. At this forum as you do I read of the horrors resulting from surgery time and time again during the nine years I have posted at this forum.

To add, a qualified active surveillance program , one of which I am enrolled in offers no side effects, but if I require active treatment, I will opt for radiation, probably as you have done SBRT

Clevelandguy
Posts: 462
Joined: Jun 2015

Swingworker,

It seems that you detest surgery but promote radiation as the best thing under the sun.   I am glad cyberknife worked for you just as a lot of folks have had similar results with surgery.  Please do not promote false information and let the folks who come to this board decide their own fate with UNBIASED information.  If you look at a lot of posts on this site you will find that both surgery & radiation have side effects and various cure rates. Your comments are not true comparing surgery to radiation side effects as other people who have experienced both treatment plans have wriiten about those bad effects.

Dave 3+4

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I am openly and admittedly "biased" against surgery but nothing I have ever said about surgery or radiation is FALSE or misleading.

I am speaking the TRUTH abot surgery.  Sorry if you don't want to hear it.  However, I have always made clear my "bias" and have ALWAYS told men to make their own choices. 

So, I don't know what you are complaining about.  Rather than attacking me, perhaps you should find a factual way to refute my criticisms of surgery.  If you don't, it's because you can't.

Clevelandguy
Posts: 462
Joined: Jun 2015

Sorry swing you are not telling the truth about surgery because you have never experienced it, your letting your bias come through.  

You wrote:  "So, I don't know what you are complaining about.  Rather than attacking me, perhaps you should find a factual way to refute my criticisms of surgery.  If you don't, it's because you can't."  Read below, My comments below are from my surgery experience plus that of one of the best urologists in Ohio.

Your own words about surgery:

"but which MUCH GREATER risks of side effects than any method of radiation",     not true, radiation folks on this board have had side effects due to radaition. some severe, some not..

" Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.", again not true, robotic has the least amount of chance for unintended tissue damage.due to the precise control and small incisions that are made.

"Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.  not true again, robotic surgery actually gives the surgeon a better field of view by looking through the monitor.  The surgeon speed is actually slowed down by the robot to give him more control & less chance of damage.  Five probes(or tools) give the surgeon a lot of control.

"Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder"  sounds right but I have not noticed any shorting of length in my penis.  The  length of the penis tissue has not been altered so an irrection should be the same length.

" A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed" yes a cath is inserted but I have not heard of any men who did not urinate after the cath was removed.  Most men are just the opposite, they pee freely after the cath is removed. I have not noticed any men in cages in the urologist office waiting to pee!

See these are all scare tactics and thats wrong.  I don't think your a bad guy but a new peson coming here for advise or our experiences needs to hear just that, not scare tactics.

I have never had cyberknife and don't claim to be an expert in that field, but I try & tell the truth about what I know and read on this board. You will never find me on this board bad mouthing cyberknife because I never had it done and don't claim to be an expert.  If someone wants to go the cyberknife route that fine with me, it's a good method in the fight against PCa.   They need to make that decison based on the facts and experiences of survivors on this board.  Maybe we can get together & have a beer some where and talk about our missing or damaged prostates.  Cheers.......................

Dave 3+4

CSN_Nydia's picture
CSN_Nydia
Posts: 2
Joined: Sep 2016

Hi everyone, 

This is Nydia and I’m a member of the Support Team here at CSN. I just wanted to remind everyone that advising others on medical care is in violation of our Terms and Conditions. While we welcome and encourage members to share their stories and experiences, please steer clear of direct medical advice to avoid being in violation. I’ve posted the link to our T&C and the pertaining section below.

 

Thank you as always for striving to help each other while abiding by the rules of the site.

 

Nydia, CSN Support Team

 

 

https://csn.cancer.org/termsandconditions

 

 

“No User shall advise other Users about medical care or attempt to influence their medical care decisions. Medical advice to others is strictly prohibited, regardless of a Member's medical education, credentials, or experience.”

Old Salt
Posts: 720
Joined: Aug 2014

I really wish that people who argue in favor of certain therapies would back up their statements with data from reputable sources.

Anecdotes may be interesting, but carry not much weight by themselves.

I realize that this issue is not specific to this forum but applies to other 'health' forums as well.

ASAdvocate
Posts: 116
Joined: Apr 2017

Rookie, your biopsy pathology report is similar to what mime was eight years ago.

And, I have been on As with no disease progression or treatment side effects.

Something for you to research and consider.

 

AZ Guy
Posts: 9
Joined: Feb 2017

I want to give Kudos to both Swingshiftworker and ClevelandGuy. This is exactly the kind of conversation that makes this forum worthwhile! A free flow of respective thoughts, ideas and opinions on the big decision we Pca guys must make. I find it interesting and sobering that a monitor came in to limit this very valuable discussion. I believe we are all adults in the forum and certainly understand we are not going to make a decision based on any one voice on the forum. Is somebody scared there will be legal action against this site because someone makes a recommendation? That is pure over sensitivity and perhaps that's a different issue about living in the USA in 2017. Anyway...thank you Swingshiftworker and ClevelandGuy!

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