Diagnosed with prostate cancer and worried!!!

Swingshiftworker said:

My Sticky

OP: Here's my long standing "sticky" on the available choice that I post for men newly diagnosed w/PCa. 

Started posting this message over a year ago and my opinion has not changed.  It mainly addresses the choice between surgery and radiation but does not deal w/cyro.  So, I'll just add that, if ED is a concern of yours, cyro is even worse than surgery in terms of the potential risks.  Every doctor I spoke w/about it told me that you are almost 100% certain to become impotent after treatment w/cyro and the probably of success would be no greater than that achieved w/surgery or radiation. 

In any event, here's my recommendation as far as the primary choices for treatment available to you.

 

Choices You Need to Consider

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 [8] 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!

 

 

SSW, This "sticky" is great!  I'm tempted to copy and save it

BTW, as far as the personal choice to live with cancer in my body, it's always been an easy decision for me. All I have to do is read a few threads every day from men complaining about the effects of their treatments, and then I know that as long as my pathology stays low risk, that I never want to join them. Everybody is different, and that's my viewpoint.

"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 don't expect miracles: At best, nerve-sparing surgery leaves men with erections not quite as firm as they were before surgery. In addition, nerve-sparing surgery may not be possible if the tumor is located near a nerve line. "

https://www.aarp.org/home-family/sex-intimacy/info-01-2014/sex-after-prostate-cancer-castleman.html

 "Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage "

Not true. Robotic nerve sparing surgery WHEN POSSIBLE shows better incidence of ED recovery than open surgery and radiation.

I have been quoting studies over this issue several times.

Most everything else was accurate... but not your assessment of Robotic nerve sparing prostatectomy.

Even the AARP article I quoted is wrong as well, my  erections are rock hard two years after RP.

mmo159 said:

Biopsy

Had a Biopsy a2 months ago was going to do another one.Is that need. I have a gleason score of six with psa of 4.82 any help would be grateful.Can to many Biopsy spread the cancer out of the prostate.

 

Apparently it is not an issue, however biopsies are not without risk. They can introduce infection but do not cause cancer to spread.  I'm guessing you are on active surveilance and are having another biopsy to determine whether it has progressed?

You should probably start a new thread from the main "prostate cancer" page rather than posting your question at the end of someone else's thread. That way more people will see your question and you will get more (and possibly better) answers.

Jon there is a difference in diagnosis with T2. cT2 (or any T number) means Clinical, that is from the information collected in the urology clinic with digital exam, psa and patient reports of symptoms. This differs from pT2 which is Pathologically definitive and can be derived from only the sectioning and microscopic examination of the whole prostate after surgical removal. Those who choose radiation are more concerned with treatment than pathology. I might agree with his comment about 15 year survival though it is a crude way to say that men with G6 tend to live for years without treatment before it becomes a threat to their health. In sum I believe that if you are a true G6 and at your age of 67 that with just about any treatment, or maybe no treatment that you will more likely die of something other than prostate cancer. Take your time, read, think, ask and make no decisions until you are satisfied. Time is your friend.

Hey John... Here's what I think about it...

Get the best surgeon available even if you gave to wait 4-6 months. Since you are Gleason 6, that gives you the luxury of waiting for a good surgeon that will be able to work the Davinci machine expertly enough to spare as much of the nerve bundles as possible, making recovery fast and complete. Davinci robotic surgery is an art unlike typical open surgery.

The side effects that are associated with RP are incontinence and erectile dysfunction. Those are eliminated with an expert nerve sparing surgeon unless he discovers more infiltration by the disease, which is unlikely in your case. Both side effects will only be briefly experienced.

But you probably know the prostatic urethra will be removed and the urethra reattached... you will be losing 1-2 inches in the length of your business tool. That is unavoidable.

I had it done, with one of the best surgeons in my area. It was the smartest decision I made prostate wise in last 12 years.

Good luck... that is what i think... only my opinion.

External beam radiation and brachytherapy should put this behind you. Just my opinion, good luck with whatever you choose. 

Grinder said:

Hey John... Here's what I

Hey John... Here's what I think about it...

Get the best surgeon available even if you gave to wait 4-6 months. Since you are Gleason 6, that gives you the luxury of waiting for a good surgeon that will be able to work the Davinci machine expertly enough to spare as much of the nerve bundles as possible, making recovery fast and complete. Davinci robotic surgery is an art unlike typical open surgery.

The side effects that are associated with RP are incontinence and erectile dysfunction. Those are eliminated with an expert nerve sparing surgeon unless he discovers more infiltration by the disease, which is unlikely in your case. Both side effects will only be briefly experienced.

But you probably know the prostatic urethra will be removed and the urethra reattached... you will be losing 1-2 inches in the length of your business tool. That is unavoidable.

I had it done, with one of the best surgeons in my area. It was the smartest decision I made prostate wise in last 12 years.

Good luck... that is what i think... only my opinion.

Majority of patients, myself included, who had RP just wish everything is thruth what you said about SE related to Prostate removal.

One that you recognized is experienced by about 50% of patients.

Whoever can avoid surgery should use that option for its own best interest.

RP lives irreparable damage and changes life for ever. It will never be same.

MK

At the risk of making your head explode after all of this good feedback, I have a few thoughts for you:

Cancer can be scary and we would all rather be fishing but you are lucky to likely be be a GS 6, this helps put you in a category of high probability of cure, and its slower growing, and you propbably have all options. AS may even be appropiate to consider.

You will help guide the selection of next steps based on your reaction to what you are learning. Some people want minimal intervention and like AS. A friend who recently went through this said "we have to get that sucker out!". He didn't care about MSK nomograms and long term outcome charts. No cancer at any level for him. Those two guys have very different "best" choices. How old are you, how strong is your ticker, are you fit, are you sexually active? 

If you opt for treatment then your choices are vast and can be confusing. Some are die hard RP fans, some are big fans of one of the many radiation options, with or without ADT, accelerated fractions, etc. One of the best things that you can do is get to the best center/doctor that you have acces to. ANY of these choices becomes a nightmare in the wrong hands. I flew 1,000 miles and braved the all day trip home 2 days after surgery (and removed my own catheter and staples)  to have a surgeon with 4,000 RP's do my surgery. I have 100% urinary continence with improving erectile function and zero complications. Am I a die hard fan of RP? Not necessarily. I thought it was the best option for me and my circumstances BUT I am a huge fan of the world renown guy who operated on me. I needed salvage radiation after and I went to Mayo with the department chair who has been doing this for 40 years. Most of the horror stories that I hear are not because RP or SBRT suck or are inferior, it's because the practitioner was not top notch. Also remember that as you visit doctors and get opinions, RP guys push RP, Rad Onc's push raditaion and radiation centers push what they invested in. What proton shop is going to push an EBRT machine down the road? I wish AS was for me because thats what I would have chosen but I don't care if I have cancer, neither does my wife who is on AS for a different type. All we care about is the probability that its deadly. Remeber that as the probability goes down then the risk of complications tugs at the choice because no intervention is a free lunch - they all have risks.

The single diagnosis of cancer is a diservice to patients in my opinion. A bunch of people die with cancer in their bodies but die of something else so the discovery of every lesion in the body is not necessarily a devastating discovery. Some are so deadly that doing anything is of limited value especially  if your older and in poor health.  Some are so benign that doing something besides monitoring may bring more risks then benefit. The trick is finding out if your in the middle and finding the best possible team to get you the best outcome for your situation. PCa usually one of the more treatable or benign cancers, especially GS 6 contained to the gland.

Try to relax and best of luck.

George

Hi, John sorry you have to deal with this. As some have said you look very much like someone who would qualify for AS. Therefore, I would get a second opinion from John Hopkins on your pathology report. They also have the most conservative AS selection process which might reduce your anxiety. Definitely follow-up with a T3 MRI. If you have a true 3+3=6 the MRI won't really show much, but that is what you want to see.  I would have loved to have been an AS candidate but ended up high-risk intermediate. This statement is from my recent T3 MRI report:  "The prostate gland measures 3.0 x 2.6 x 3.4 cm in CC, AP, and transverse dimensions, for a total prostatic volume of 14 mL. Post-surgical changes of prior transurethral resection of the prostate gland again noted. The prostate gland now demonstrates mildly diffusely decreased T2 signal throughout, consistent with interval hormone therapy. The focal 1.8 cm PI-RADS 5 lesion seen within the right mid gland extending into the base and apex on the prior MRI is no longer visualized as a focal lesion. No other focal prostate lesions are seen." As you can see that is a lot of information.     After 7 months of research, I now realize that there really aren't that many treatment options for PC. At first, it seems there were too many to decide, but as I gained additional information I was able to eliminate many. I hope that folks will take their time in their decision-making weigh cost, the risk of complications, treatment outcomes, diagnostic data, prior health conditions, family longevity and genetics, and other factors prior to selecting any of the potential life-changing treatments for PC. It isn't always black and white.