I'm a newbie here

VascodaGama

Best wishes for an eventless surgery

Good news indeed. I hope everything goes smoothly and that you recuperate the soonest. ED is a matter of concern so that try being "active" (all forms) to have everything back to normalcy.
The PSA two weeks after surgery is already reliable so that you can verify success and have peace of mind.

Best,

VG

Old Salt

Concur

You have done the homework and gotten an excellent grade (from all of us) for thinking the issue through.

Best wishes for an uneventful recovery from the procedure.

As you know, you will get a detailed pathology report of your 'missing organ'.

Igarza

Good luck

Hi Mike, I just wanted to wish you well.  I just started a new post....but your story and age are very similar to mine.  And you, and all the goods folks out there have enabled me to come to a better understanding of formulating a decision.  From what I have learned, the skill of the physician is key, and since your doc has done them quite a bit, I am sure it will be successful.  I am going to MD Anderson in Houston in early November...and like you...at least right now I am leaning towards surgery...but will not finalize my decision until after my visit.  Again...god bless and good luck.

Josephg

Decision

I, too, wish you good luck and the best of outcomes, as you start a new milestone on your PCa journey.  You asked questions, listened to the answers, your performed your own research, you asked more questions, and finally you made your own informed decistion.  Nobody can ask you for more.

Keep us up to date on your ongoing experiences, and if you ask, we will continuue to provide you with our 'lay' opinions, based upon our own PCa journeys and accumulated research.

Old-timer

I offer a vote of support

Mike: I concur with your decision, I wish you luck, and I expect that all will go well for you and your bride.

I have no knowledge concerning doctors in SC. But I must tell you that I enjoyed spending several days in Columbia and nearby counties during the 1990s digging up family roots.

Old-timer "Jerry"

MEtoAZ

mikedayton62 said:

MRI vs Gleason score

I believe that the MRI and the Gleason score indicate two different things. The MRI can see the size of a tumor, but the Gleason score is actually an estimate of how aggressive the cancer is, how quickly it will spread, and how aggressive the treatment plan should be. So in my case it appears that I have an 8mm tumor (from the MRI) comprised of cancer cells that were rated Gleason 6 under the microscope (from the biopsy), meaning that it is slow growing, giving my wife and me time to make a treatment decision. With a tumor that appears to be wholly contained in the prostate, and a Gleason 6, it is highly likely that no cancer cells have made their way out of the prostate yet. In addition to this, there are a number of other things factoring into our decision between Brachytherapy and Robot Assisted Laproscopic Prostatectomy:

1. We have ruled out AS due to my age and relatively good health.

1a. My PSA has doubled since last year (6 to 12). This is another factor that leads us to rule out AS.

2. The argument is still out as to which treatment has better long term non-recurrence results. Based on what I have found, this ranges from a draw to a slight advantage for the Brachytherapy.

3. Immediate side effects are probably worse for the RALP, but long term are worse for the Brachytherapy.

3a. I recently spoke to a friend who is still recovering from open prostatectomy. He is very pleased with the result.

4. Should we opt for RALP, the urologist who will perform the procedure has done it many hundreds, if not thousands of times, thus improving the chances of a positive outcome with regard to side effects.

5. Emotional concerns - definitely a large factor in our decision, because I will be living as a cancer survivor, and I want a few unknowns as possible into the future, and I would like to live those years with my wife at my side, not suffering from her own fears. With the RALP, the side effects will be immediately apparent, but also very likely treatable, and the only real unknown going forward is the chance of my PSA going up again later on. Given my numbers, this probability is quite low, but should this happen, there will be treatment options. With the brachtherapy, however, there could be side effects that might not show up for a number of years. Because of this, both of us are leaning toward RALP.

We are awaiting one final piece of advice before making our decision. Through the health plan provided by my employer, we have a service called Expert Medical Opinion. With this program, three separate doctors look at my records and give a report. Once we have their opinions, we will proceed with our chosen treatment.

Sorry for getting long winded, but I hope I was able to at least partially answer your question.

Brachytherapy vs Cyberknife

Good luck with your next steps!

Just a little point on rad choices.  Brachytherapy involves inserting radiative seeds into the prostate.  Prior to Cyber-knife, it was probably the most preferrable non-surgical option (even Andy Grove chose that path - his story was in Fortune Magazine here http://www.phoenix5.org/articles/Fortune96Grove.html .  It works, but as I younger guy, I wouldn't want to go that route as it will likely cause some downstream complications over time.  Cyberknife is short-term radiation performed in 4-5 45 minute treatments and you are done.

I do not understand all the comments about bowel problems that I read in this thread as it relates to "radiation".  There are numerous radiation options so for those who continue to lump all radiation in the same basket of "issues", please get your facts straight or at least expand your knolwedge beyond what your Uroligist will share to get your business.  Cyberknife is sub-mm precision, is does not impact the bowels or the bladder.  It doesn't lead to immediate incontinence or ED.  It has a 10+ year track record and results that are on par with the best options including surgery for those with early-stage cancer and a normal sized prostate.  I admit complete ignorance for more advance cancer or enlarged prostates. I did not have either issue thankfully. 

I chose CK because I didn't like the long-term impact of surgery.  Surgery is what most men are steered to unless they do their own research, that doesn't mean it is the best choice, just the one urologists want you to take.  I concluded that I did not want to have some form of leakage the rest of my life and years of ED challenges at 52 years of age if there was a better alternative that provided similar results without those side effects.  CK gave me an option to avoid those side effects.  That was my decision, I certainly respect others in their choices.

 

desperate for hope

Will Doran said:

Robotic Surgery, Radiation, and ADT

Mike,

Sorry to hear of your diagnosis.  I was diagnosed in August 2013, with a PSA fo 69, Gleason 7 and I had no symptoms.  Doctors sent me to Chemo,  Radiation Oncologists as well as Surgeon to make my decision.  I decided to have the surgery.  It was good thing, since I had a birth defect, where my prostate was adhered to my bladder.  Thus the Radioactive seeds could not have been place where they needed to be.  My post surgery results came out as me being a Stage pT3bN1. One small spot in a lymph node.   My doctors told me they were going to be aggressive and they were.  I was treated as a Stage 4 and had two years of Lupron and 8 weeks of radiation after the surgery.  So far, after three years, my PSA is considered undetectable.  It's been a rough three years, but it's getting better.  They had my testosterone knocked down to 17.  Normal is 250 - 1,100.  My "T" levels are back up to 320 at this point.  That part of this was rough.

All of our cases are different, so what has worked for me will not be what others would do or have done.  Make sure a research all the options and side effects of treatments and decided what makes the most sense for your situation.  Think about quality of life.  This is a hard battle, but there is hope.

Fight like the devil

Love, Peace and God Bless

Will

HI Will, 

HI Will, 

Thanks for sharing. When did you begin the Lupron? Also, how many weeks after surgery did you begin the radiation?  Did you have extracapsular extension or SVI? We are thinking of the same 3 treatments. 

mikedayton62

tonycue said:

Question for Mike Dayton

Hi Mikedayton, noticed your post and thought I'd ask a question....I am awaiting results of a saturation template biopsy because of a "something" seen on a 3T MRI scan.....I was under the impression that any cancer that showed up on MRI had to be "clinically significant" ie G7 or above....could you give me more details re your G6 please....I'm currently sweating out a 2 week wait

     Thanks in advance

         Tony

MRI vs Gleason score

I believe that the MRI and the Gleason score indicate two different things. The MRI can see the size of a tumor, but the Gleason score is actually an estimate of how aggressive the cancer is, how quickly it will spread, and how aggressive the treatment plan should be. So in my case it appears that I have an 8mm tumor (from the MRI) comprised of cancer cells that were rated Gleason 6 under the microscope (from the biopsy), meaning that it is slow growing, giving my wife and me time to make a treatment decision. With a tumor that appears to be wholly contained in the prostate, and a Gleason 6, it is highly likely that no cancer cells have made their way out of the prostate yet. In addition to this, there are a number of other things factoring into our decision between Brachytherapy and Robot Assisted Laproscopic Prostatectomy:

1. We have ruled out AS due to my age and relatively good health.

1a. My PSA has doubled since last year (6 to 12). This is another factor that leads us to rule out AS.

2. The argument is still out as to which treatment has better long term non-recurrence results. Based on what I have found, this ranges from a draw to a slight advantage for the Brachytherapy.

3. Immediate side effects are probably worse for the RALP, but long term are worse for the Brachytherapy.

3a. I recently spoke to a friend who is still recovering from open prostatectomy. He is very pleased with the result.

4. Should we opt for RALP, the urologist who will perform the procedure has done it many hundreds, if not thousands of times, thus improving the chances of a positive outcome with regard to side effects.

5. Emotional concerns - definitely a large factor in our decision, because I will be living as a cancer survivor, and I want a few unknowns as possible into the future, and I would like to live those years with my wife at my side, not suffering from her own fears. With the RALP, the side effects will be immediately apparent, but also very likely treatable, and the only real unknown going forward is the chance of my PSA going up again later on. Given my numbers, this probability is quite low, but should this happen, there will be treatment options. With the brachtherapy, however, there could be side effects that might not show up for a number of years. Because of this, both of us are leaning toward RALP.

We are awaiting one final piece of advice before making our decision. Through the health plan provided by my employer, we have a service called Expert Medical Opinion. With this program, three separate doctors look at my records and give a report. Once we have their opinions, we will proceed with our chosen treatment.

Sorry for getting long winded, but I hope I was able to at least partially answer your question.

mikedayton62

UPDATE

Sorry I haven't been here in a while. I had my prostate removed by RALP on October 26, 2016. A week later we got the pathology report back.

As a reminder, my pre-op indicators were:

DRE normal, PSA 12.04, PSA one year prior was 6, Gleason 6, one core of 12 positive at 35%, Prolaris score was +3.3(!)

Based on the pathology report, my prostate weighed 57 grams, 30% of it was cancerous, the cancer was bilateral, Gleason was 3+4=7 with tertiary Gleason 5 present. The margins were negative (this is an indication that I am likely cancer free now). I will receive the results of my first post-op PSA on December 5.

As expected, I am experiencing 100% ED and significant incontinence. I know it is way too soon for the ED to begin to subside, and with the incontinence I have good days and bad days, but the general trend seems to be positive.

My surgeon (who is the partner of my urologist, mentioned below) is keeping me out of work probably until December 5, but based on my longeivity with my employer and their very supportive short term disability policies, I will continue to receive full pay while I convalesce.

My wife was seriously concerned about the difference between the biopsy and pathology reports, specifically, how 6 of 6 cores on one side, and 5 of 6 on the other side can completely miss the cancer in a prostate that was 30% involved bilaterally. Our other concern was why my urologist never mentioned the 3.3 Prolaris score, which indicated a highly aggressive cancer, supported by the tertiary Gleason 5 from the pathology report. We feel like he had us make our treatment decision without all of the facts, especially the one pre-op indicator we had of a highly aggressive cancer. Luckily, we got this information from the free second opinion service provided with the insurance package from my employer. As of right now, my wife and I both like and trust the surgeon much more than his partner who was my original urologist. We are going to switch to him from now on.

I have seen a lot of discussion here and on other sites about the value of the PSA test, but as far as I am concerned, it saved my life.

VascodaGama

Great update

Mike,

Thanks for the update. I am glad for your positive atitude in spite of the worsen pathologist report. I hope they managed to remove the whole cancer and that you are now cured. Upgrading results is common in surgeries. The biopsy can miss those cancer spots and different pathologists may judge differently when classifying grades. The critical finding is the tertiary Gleason grade 5. I wonder about other findings such as the seminal vesicles and the lymph nodes.

As a note to your wife's concern on the difference in the reports; one should think that the biopsy examines just a fraction of the whole gland. For instance, a 12 needle biopsy draws about 0.2 cc of tissue (2cm x 1mmD x 12) which is less than 1/30th of a normal sized gland (25 to 30cc). Your gland weighing 57 grams (=57 cc) means that it was larger than normal (or that they have included the weigh of the seminal vesicles).

Best wishes for full recovery.

VG

 

mikedayton62

VascodaGama said:

Great update

Mike,

Thanks for the update. I am glad for your positive atitude in spite of the worsen pathologist report. I hope they managed to remove the whole cancer and that you are now cured. Upgrading results is common in surgeries. The biopsy can miss those cancer spots and different pathologists may judge differently when classifying grades. The critical finding is the tertiary Gleason grade 5. I wonder about other findings such as the seminal vesicles and the lymph nodes.

As a note to your wife's concern on the difference in the reports; one should think that the biopsy examines just a fraction of the whole gland. For instance, a 12 needle biopsy draws about 0.2 cc of tissue (2cm x 1mmD x 12) which is less than 1/30th of a normal sized gland (25 to 30cc). Your gland weighing 57 grams (=57 cc) means that it was larger than normal (or that they have included the weigh of the seminal vesicles).

Best wishes for full recovery.

VG

 

The seminal vesicles and lymph nodes were clear.

mikedayton62

mikedayton62 said:

The seminal vesicles and lymph nodes were clear.

To clarify

The seminal vesicles were removed and the pathologist found no cancer in them. No lymph nodes were removed, so i assume that means the surgeon saw no need to remove them.

Max Former Hodgkins Stage 3

mikedayton62 said:

To clarify

The seminal vesicles were removed and the pathologist found no cancer in them. No lymph nodes were removed, so i assume that means the surgeon saw no need to remove them.

Yes

Mike,

Removal of the seminal vesicles is nearly universal today in RP. It is good that they were clear.  Removal of sentintal lymph nodes for biopsy is at the disgression of the surgeon.  My surgeon removed none either, but my specifics were considerably milder than yours.  But all negative margins, a negative set of seminal vesicles, and presumably negative for signs of perineural invasion all strongly suggest no escape anyway.  It is possible that the gland was tested negative for positive margins before the surgeon closed (immediate biopsy is common in cancer surgeries).

My pelvic region was TOTALLY NUMB for at least a month, and slowly regained feeling.  At first I thought that there was no way I would ever have normal sensation, but it came back gradually but steadily.  Do not let the numbness scare you.  I was having sex after several months with TRIMIX self-injections, later with Cialias, and today require no Cialias.  It sounds also like you are well on the way to continence.  Some guys move faster, some slower. Be aware that there are a wide variety of pad thicknesses available for any degree of problem.

Wishing you an "undetectable" first PSA.  Understand that the PSA will show some numbers to the right of the decimal, but if they are under the threshold value, then it is clinically "undetectable." It sounds overall like your result will indeed by undetectable. Labs and cancer centers differ a little on the definition of undetectable, and your doctor will of course explain all of this to you. 

max

DaVinci, December 2014

Old-timer

mikedayton62 said:

UPDATE

Sorry I haven't been here in a while. I had my prostate removed by RALP on October 26, 2016. A week later we got the pathology report back.

As a reminder, my pre-op indicators were:

DRE normal, PSA 12.04, PSA one year prior was 6, Gleason 6, one core of 12 positive at 35%, Prolaris score was +3.3(!)

Based on the pathology report, my prostate weighed 57 grams, 30% of it was cancerous, the cancer was bilateral, Gleason was 3+4=7 with tertiary Gleason 5 present. The margins were negative (this is an indication that I am likely cancer free now). I will receive the results of my first post-op PSA on December 5.

As expected, I am experiencing 100% ED and significant incontinence. I know it is way too soon for the ED to begin to subside, and with the incontinence I have good days and bad days, but the general trend seems to be positive.

My surgeon (who is the partner of my urologist, mentioned below) is keeping me out of work probably until December 5, but based on my longeivity with my employer and their very supportive short term disability policies, I will continue to receive full pay while I convalesce.

My wife was seriously concerned about the difference between the biopsy and pathology reports, specifically, how 6 of 6 cores on one side, and 5 of 6 on the other side can completely miss the cancer in a prostate that was 30% involved bilaterally. Our other concern was why my urologist never mentioned the 3.3 Prolaris score, which indicated a highly aggressive cancer, supported by the tertiary Gleason 5 from the pathology report. We feel like he had us make our treatment decision without all of the facts, especially the one pre-op indicator we had of a highly aggressive cancer. Luckily, we got this information from the free second opinion service provided with the insurance package from my employer. As of right now, my wife and I both like and trust the surgeon much more than his partner who was my original urologist. We are going to switch to him from now on.

I have seen a lot of discussion here and on other sites about the value of the PSA test, but as far as I am concerned, it saved my life.

Mike, More good wishs to you

I just now noticed your November 20 update. Thank you for submitting it. As you might guess, I am sort of keeping tabs on your PC journey. It appears that things are working OK for you. From my experience, the ED and incontinence will continue to improve. I applaud your wife for her support. I am so thankful for my wife's loving companionship during 67 years of marriage and 25 years of PC survival.

May all of our years be brightened by glowing sunshine and glistening rainbows.

Old-timer (Jerry)

mikedayton62

It's been a while, but here's an update

I'm about 12 weeks post-RALP. My first PSA, a month after surgery, was 0.02. Next PSA scheduled for early March.

ED still 100%, incontinence improving.

VascodaGama

Congratulations

At my surgery the surgeon used PSA=0.06 as the threshold to judge success. Remission is taken as PSA<0.05 by most doctors. Yours is way bellow that. Congratulations.

ED is of concern. You need to be active to avoid atrophy.

Best,

VG

Laxdad

One year out

mike

i am a first time participant in any forum.   I had surgery a year ago.  It's been an interesting journey. I read the posts in the blog, I am on a similar path, just a little further along.  I was diagnosed at 55, I had robotic surgery by an excellent surgeon, my post numbers are very good.  at 55 the downside of allowing the cancer to spread was too great.  My wife and I both agreed robotic was the way to go.

It just so happens that I sent my doctor a video today, in the 12 months since surgery I have run over 1300 miles, done 5000 push-ups and 10k sit-up.  I have worked hard not to let surgery slow me.  That does not mean it has not been a challenge, I just figured the more I pushed the better the recovery.  

I could define the past year in quarters. First quarter sucked, no way around it.  My goal was to run 4 miles, 4 weeks post surgery. I was slow but steady But I got there.  The incontinence was a hassle but got progressively better.  I started off wearing pads all the time.  ED in Q1 was concerning.  I was told to be patient by the doctor and he was right.  That doesn't stop you from wondering if "it" will ever work again.  By Q2 my running mileage and speed were up, I was using smaller pads, and "things started moving down there".  My doctors prescribed cialis since day 1.  They figure anything that increases the blood flow is a good thing.  I could not argue the logic.  

At 12 months, I wear a thin liner for exercise or heavy lifting. The pace of Improvement in the incontinence is slower but this was expected As I have come a long way since Q1.  It's still getting better all the time.  ED is improving, sex life is not back to normal but getting there.  I run 5-7 miles a day, hike mountains and feel that life is almost back to what it was.  Be patient, set goals for each quarter, and don't back off.  

I hope this helps