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Treatment options with diagnosis at relatively young age.

Don_Carlos
Posts: 5
Joined: Apr 2012

I was diagosed last week after biopsy with 3+4 result. I am 51 and weighing options. Have always valued quality of life over quantity. My first instinct is to let nature take its course. It was not long ago we did not have routine PSA testing that started me down this road.

Doctor recommends robotic surgery. He says at my age the side effects / damage from radiation options might be significant some years out, while an older patient might not live to ever realize them. I am very concerned about urinary control and sexual function side efects of surgery. He says chances are good that nerve bundles can be preserved and and that I should have favorable expectations that urinary control can be restored not toolong after surgery. My initial (weak) knowledge-base implies reasonable statistical probability that I will regain urinary control and sexual function after surgery, but still to much uncertainty. I plan to get a second opinion soon.

I know if I let it go and live until it metastasizes, that it is a terrible death. I have lost friends to PCa. But, that could be some years off, and I could have several high quality years before that.

Torn about what to do.

Don

jbw901
Posts: 23
Joined: Feb 2012

I was diagnosed last July (mid-50s, PSA 5.3, 1 core positive <5%, Gleason 3+3), and am now 11 weeks post robotic prostatectomy. I wrestled with active survelliance, but months of research and consults led me to the decision to proceed with surgical treatment. Not an easy decision, but am glad to be moving forward with recovery.

I didn't give much consideration to radiation treatment, but my advice when considering the decision of surgery
-Do research (online information and books: Walsh, Scardino, McHugh)
-Gain insight of individuals through a Protate Cancer Support Group
-Interview surgeons, finding someone you are confident in, who specializes in this procedure, and has a reputation as being "one of the best"

I found getting multiple opinions (including a second pathology review of biopsy) helpful as I proceeded through the decision process.

Good luck with your decision.

hunter49
Posts: 199
Joined: Oct 2011

Welcome to the club and sorry you were invited. That said I was diagnosed last September at 49 with PC Geason 3+4 1 out of 15 cores posative. I weighed the options but in the end went with a Robotic RP. I was dry out of the gate with only a little stress incontinence but that stopped in January. I had good erections in December but have had dificulty from January till late March but now getting better. I am also not taking any drugs to help,. Doctor spared both nerve bundles and after pathology gleason was upgraded to a 4+3. All margins and SV and lymph clean. That said I would do it all over. At 49 I have a lot to look forward to. You really do not know if you will live 3, 5 or 10 years if you do nothing. You need to get a second opinion, I recomend Hopkins they have a great program and interview a few surgeons. Make sure they have done at leats 500 of these surgies at a minimum. Avoid teching hospitals. Where are you located I may have some good recomendations for you. Good luck and keep fighting

Don_Carlos
Posts: 5
Joined: Apr 2012

I really appreciate your feedback.

I was in a daze during the only consultation after pathology results. Although he offered a photocopy of pathology report, I accidently walked away witout it late on a Friday afternoon, and then left town on business travel for all of last week. I plan to pick up a copy in the morning and arrange for an appointment for a second opinion/pathology review.

I think I recall that multiple cores were positive. Seems like he said he took 8 cores on each side, and that 3 or 4 cores, all on left side, were positive, and that cell structure of some specimens indicated fast-growing/aggressive cancer.

I am not experienced with searching for the qualifications/experience of surgeons. Not sure how to go about that. I am fortunate to be in a great medical town (Birmingham, AL). My urologist is also a surgeon, and he admitted bias towards that option.

Any suggestions about how to go about researching qualifications/experience of surgeons would be greatly appreciated.

starr15
Posts: 31
Joined: Oct 2011

Hunter, i dont understand. Hopkins IS a teaching hospital.

Swingshiftworker
Posts: 620
Joined: Mar 2010

Sounds like you already have a healthy skepticism about the "benefits" of surgery for prostate cancer (PCa) at your relatively young age -- and well you should!

Your urologist said the same thing that mine did to me and most other men who are diagnosed w/early stage PCa BUT it's not necessarily the best thing for you to do.

While it MAY be true that there MAY be some later problems caused by radiation treatment, that is not necessarily true for you and MAY no longer be true (or not as true) as it was in the past because of significant advances in radiation technology recently.

Also, FACT IS, many men who undergo surgery for PCa also have to receive radiation after it is discovered that the surgery has FAILED because NOT all of the cancer was removed! Another "fact" that is often offered to discourage men from choosing radiation is the belief that once you have radiation, you can't do it again. Again, this may have been true before but is NOT necessarily true anymore nor necessarily true for you.

The first thing I'd suggest that you do is what has already been recommended. Get a 2nd opinion on your biopsy ASAP!!

I got mine done at Johns Hopkins by Dr. Jonathan Epstein, who is considered one of the leading experts in the field. There's a significant difference (pathologically speaking) between Gleason 6 and 7 and some treatments "may" not be available to you for a 6 but not a 7. So, it's best to start there. Get your slides and send them to Epstein ASAP!

You can get the info you need for that here:

http://www.hopkinsmedicine.org/international/physicians/medical_news/second_opinion/why_second_opinions_rule.html

http://www.hopkinsmedicine.org/international/patients/second_opinions.html

Next you should take a look at the following article written by a physician about the risks of surgery and the reasons why it is so often recommended to patients by urologists even though they know the risks of failure:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/

While you would probably not be a good candidate for active surveillance (AS) -- also known as "watchful waiting," if you are at Gleason 7 (which you'll know for sure after the 2nd opinion on your biopsy) but you would have that option at Gleason 6.

Here's a report on another study that concludes that there is no significant benefit of surgery over AS:

http://biotechstrategyblog.com/2011/05/aua-2011-results-from-pivot-study-show-no-benefit-from-radical-prostatectomy-in-low-risk-early-stage-prostate-patients.html/

And here's a statement by a physician w/early stage PCa who underwent surgery for PCa that, if he had it to do over again, he'd have opted for AS instead:

http://biotechstrategyblog.com/2011/05/aua-2011-results-from-pivot-study-show-no-benefit-from-radical-prostatectomy-in-low-risk-early-stage-prostate-patients.html/

Lastly, take the time (you have less w/Gleason 7 than Gleason 6 but you still have time) to do the research to find out all you can on the available options. Among them are Low Dose Rate (LDR) Brachytherapy (BT), High Dose Rate (HDR) rachytherapy, CyberKnife (CK which is a form of Stereotactic Body Radiation Therapy), Proton Bean Therapy (PBT), IMRT/IGRT (Intensity Modulated Radiation Therapy/Image Guided Radiation Therapy) and HiFu (High Intensity Focused Ultrasound).

Most of these methods are recommended primarily for men w/Gleason 6 but most of them can still be used for men w/Gleason 7.

I and others here w/early stage PCa received CK as their form of treatment without any signficant side effects.

IMHO it is currently the BEST method for treating men w/early stage PCa because it is the MOST accurate in terms of delivering the radiation with the greatest degree of precision (sub millimeter accuracy at the margins) and with the least risk of serious side effects. Treatment is completed in only 4-5 sessions and no special devices are required to restrict body movement during treatment because the computer program adjusts for both body and ORGAN movement during treatment.

Here's a video of Dr. Fuller (who uses CK in San Diego) which gives an good overview of CK and it's advantages over other methods:

http://link.brightcove.com/services/player/bcpid1311218266001?bckey=AQ~~,AAABMTO41yk~,0BDF4jnPRYk18rLHqrcfnGVhJxC-Y8Rm&bctid=1349680876001

However, if you can't/don't want to go w/CK, I'd also recommend you consider PBT or HDR BR. I do not recommend LDR BT, even though it is widely used and generally successful, because of the permanent placement of radioactive seeds in your body, the risk of "human error" and/or movement in the placement of the seeds which can cause serious tissue damage and related side effects.

This info should give you a good jump start in your journey to find the "right" treatment for you. I wish you all the best.

Good luck!!!

MCinNC
Posts: 32
Joined: Sep 2010

Hi Don. I know your diagnosis was like a kick in the gut to you, and the emotional tidal wave that follows is something no one is used to dealing with. But, as you'll hear from a lot of posters on this board, deciding what is really best for you in your situation is NOT something you have to do immediately. Yes, this is serious. Yes, it does deserve your full attention. But..... you have time to figure this out on a rational and common sense basis so that whatever you decide to do, it makes sense to YOU. You are the one that has to live with this, so it needs to make sense to you.

I was diagnosed at 56 with 1 of 12 cores, Gleason 6, and after a few months and a lot of reading and talking to doctors I decided on active surveillance. If and when I need treatment in the future, I have a pretty good idea about what treatments I may consider and who the doctors and facilities are that I will go to.

It was not an easy process to figure out. I didn't really know anything about PC or the science relating to all the different treatments. It seemed like everyone I talked to had a bias and was knowledgeable about their specialty but not any others. I resented that I had to become an "expert" in order to pick from all of the options that these specialists recommended. Eventually, I learned enough about it, and met people from time to time who were really helpful, that the fog began to clear and I felt comfortable making some choices.

I think that the process that we all go through involves: 1) learn all of the facts about your case, confirming the pathology, getting all the data that is available; 2) learning what PC involves and what treatment options are out there for cases like yours; 3) identifying and talking to people who specialize in treatment options you're curious about; and 4) only then trying to make a good decision for you and your particular cancer and your particular life.

There are lots of good books out there you can read. There are prostate cancer "clinics" at a lot of big hospitals where you can meet during one visit a surgeon and a radiologist and an oncologist or other specialist - without having to chase them down individually. Some will actually meet as a group after you talk to them and give you comments or consensus from the group.

The main thing is catch your breath. Try to think about the process logically, and begin to tackle it on your terms. You do have time to make a really good decision.

Good luck.

Mac

SV
Posts: 56
Joined: Sep 2010

With an initial report of a Gleason 9, which turned out to be a Gleason 7, I had robotic surgery 10/19/10 and am so glad I did. You can find horror stories about every treatment out there so take them with a grain of salt. The critical factor with DaVinci is finding an experienced surgeon or you could be one of those who now complain of side effects--just like with radiation. Some say five hundred under his belt is sufficient, I say into the thousands is better.

Here's my experience
http://csn.cancer.org/node/202020#comment-1074465

Good luck and God bless.

Don_Carlos
Posts: 5
Joined: Apr 2012

Thanks for sharing your story. Please don’t be offended, but although your story of battling PC is not the kind of nightmare I have read in some threads, the prospect of me having a similar experience is very repulsive.

I went for other opinions this week, but so far, all recommendations are unanimous for RP surgery. I am considering scheduling it around the second week of July. That timeframe will allow me a couple of months to enjoy without side-effects from surgery, and to get in better shape so that the impact of the surgery might be minimized. That schedule will also provide me with some summer months after surgery, allowing me to exercise during my recovery period.

If my wife was not in the formula, I do not think I would make elect to proceed with the surgery. But she has always forbidden me from outliving her. Damn her for being so lovable.

The surgeon I am leaning towards has over 1200 under his belt. Our fathers used to do some work together, mine was a surgeon and his was a urologist.

Nice day outside. About ready to go run a few miles.

ralph.townsend1's picture
ralph.townsend1
Posts: 350
Joined: Feb 2012

Why wait until July? If this is aggressive type of prostate cancer, should you wait that long? Time could only add the chance of escaping from the area!

Good luck and God bless

VascodaGama's picture
VascodaGama
Posts: 1518
Joined: Nov 2010

Don

It seems you have fixed on a treatment and I congratulate you for such. After diagnosis my doctor gave me one week to recover from the “shock” and then wake me up with the question; “Have you decided on what to do?”
That was scaring and it took me two months for researching and getting second opinions and to reach to a decision followed, two weeks later, by open surgery.
I agree with Ralph. Why should you wait if you got already a fixed decision on the course to take?

In any case, if you are not sure yet I strongly recommend you to gather all the information, discuss with your family the pros and cons (financial included) and follow what is most comfortable to you.
Having prostate cancer is not a death sentence. One should learn to live with it but never friend it. Never give up in the fight is the motto.

You have not shared with us data from tests, image studies or results from the pathological report on the biopsy, neither the clinical stage attributed to your case. Without such information guys here cannot give you opinions that could help you in your thoughts.

Gleason 7 has a component pattern 4 that is aggressive. In your case 3 is the evident type but its percentage in the total volume becomes important in the presence of a positive image study or extra capsular extensions.

Only radicals can secure a cure, but the risks of the treatment and the side effects should be considered if you dare much for the Quality of Life, and I think that young fellas should weigh the matter carefully. There are things that one cannot live with or without it.
Treatment outcomes depend a lot on the skills of the caring team and facilities.

I would recommend you to prepare a list of questions when discussing with your doctor. Here are some ideas for your List;
http://csn.cancer.org/node/224280
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
A compendium on Prostate cancer and care;
http://www.lef.org/protocols/prtcl-138.shtml

Your comment on PSA is not totally correct. PSA became a common test for PCa prevention and detection since 1995. This is already 15 years at the service of the PCa community.
What were your numbers ?

Wishing you luck and peace of mind.

VGama

Don_Carlos
Posts: 5
Joined: Apr 2012

You are right Vasco, I have not shared many facts.

Symptoms – Virtually none. Some frequent urination when drinking beer or several coffees (who doesn’t). Sometimes sleep through night without getting up to urinate, sometimes up once per night (about 50/50). No difficulty urinating, and feel evacuated when I do. No ED (wife brags on my Italian drive). Occupational anxiety does get to me at times and I fail to stop and smell the roses. But when I do stop to smell them, I perform well. It has been many years since I have wanted to do it but couldn’t.

PSA was 2.5 in 2007 & 2009. Went 3 years without a test. Had to see doctor to get Nexium prescription refilled in early March 2012. PSA was 5.5.

Saw urologist and was prescribed Cipro for 3 weeks. Subsequent test still 5.5.

April 10th 2012, Biopsy: 8 cores right, and 8 cores left (length 2.0 cm, diam. 0.1 cm, each core)

Right – Benign prostatic tissue with acute and chronic prostatitis, focal glandular atrophy with a dense mix of infiltrate and acute and chronic inflammation.

Left – Prostatic adenocarcinoma, Gleason’s 3+4=7, three of eight cores involved, approx. 20% volume, show a complex proliferation of atypical glandular profiles with focal gland fusion.

Bottom line, I have cancer.

I have been studying/educating myself. There is more to learn, and I will. Current plan gives me time to learn, and even to change my mind. A couple of months not likely to make a difference, but it might. I am not scared of dying, never have been. But I do love my wife, and she is scared of being without me after 27 years. She was a good military wife, and never thought that I would not make it home. I am a survivor.

But, I am scared of being incontinent with ED.

Have had people close to me die of PC. Have had people close to me die of other cancers, some after declining or discontinuing treatment for quality versus quality tradeoff. Have had major surgeries myself, and spent time with a colostomy bag. Also require regular examinations for recurrence of melanoma. Might get wiped out by a truck on my motorcycle any day.

I always prepare a list of questions when visit doctors. I have been encouraging others to do that for years. I am an anal-retentive engineer. Ask any doctor about having an engineer for a patient.

Have not known anyone personally have robotic RP surgery. Those I knew that had RP, had it before they had so much success preserving nerve bundles with DaVinci, and they did have incontinence and ED after. Will visit a support group in a couple of weeks, and hopefully I will personally meet someone with a post robotic RP success story.

My father was diagnosed at 78 with aggressive PC. With his otherwise good physical condition, treatment was highly recommended so he would not suffer and die from the PC. He is a retired surgeon, but elected directed radiation. Short term radiation damage to his rectum resulted in bowel control issues. That has been a couple of years, and he still is not okay. He may never be. I do not want to go that route. They have bigger concerns about long term radiation damage at my age.

All of that said, I do welcome further input. As I said, although I have learned much, I still have much more to learn and consider.

Thanks for listening.

hunter49
Posts: 199
Joined: Oct 2011

Don well spoken. I admire your stance. I am not much older than you and a story oh too similar. If you would like to contact me let me know would love to talk to you about why I elected for surgery. My uncle was head of urology at a hospital in NY and a good friend is at Hopkins working on developing vaccines for PC. I met with Partin, Epstien and other top doctors in this field and would like to share what I learned and information gathered with you if requested. If you want e-mail me a way to contact you I am here at your request. Rock on.

todd_seals
Posts: 2
Joined: May 2012

Don,
This is my take on it for what it is worth. I was diagnosed 6 years ago with a p.s.a. of 3200, gleason 3+4. At the time I had bone, lung, lymph, and brain metastasis. I would do anything to be cured but that is impossible. I have a friend who undertook the surgery. He had positive margins and did salvage radiation followed by 18 months of hormone therapy. 5 years out he has no continence issues, has no e.d. and has undetectable p.s.a. His testosterone level is up to normal range and life goes on.

On the flip side of the coin, because it had spread and surgery was not an option, I am six years out, have been on hormones the entire time, have no libido, castration level testosterone, E.D. and have recently been diagnosed hormone refractory. I started my first round of provenge yesterday.
Your best shot at a normal life is getting rid of the cancer while it is still possible. Gleason 7 while not the most aggressive is nothing to screw around with. At the age of 51 you still have plenty of testosterone for the cancer to feed on. It will spread and in a short time you will be on hormones and fighting for your life as I am.

VascodaGama's picture
VascodaGama
Posts: 1518
Joined: Nov 2010

Don

Thanks for sharing your story. Many reading your post will get an idea of the difficulty of the Decision Process for a treatment. I think that by waiting a couple of months in researches will give you power in the “driver’s seat” and better understanding of what to expect from your journey with PCa.
Unbiased second opinions are important (at least three) and a proper diagnosis will help in the decision and lead to better outcomes.

Nevertheless, you may like perfection but in PCa there are many incognita and unknowns. Treatments are kind of primitive and done based on past experiences which may not fit a particular case. Each one is similar but not equal and what works for some may not do well for others.
You are the only one that can decide what is good and acceptable in your anal-retentive principles. Probably some “flexibility” when pondering may be a better approach.

Rates of incontinence and ED in surgeries are high. The surgeon experience will weigh in the outcome. Colitis are typical in radiation treatments and that does not depend on the radiologist but on the isodose planning which field can vary according to one’s decision. The way to deliver radiation also weighs in the outcome.

In any case, both radicals (RP or RT) are done with intent at cure so that risk of injury and risks of permanent side effects exist. Nerve spare technique may improve things but do not rely on it. Most of the cases never get to the same normal status as before the “cutting” occurred. Radiation does not differ on the age of a person. Late side effects do exist and they seem to occur from the 5th year on. It is difficult to implicate a condition for any late effect (eg; cancer) of a radiation treatment done many years before.
I do not know if the military discipline can help in sorting out things.
You will need the opinion of your family of doctors and wife to get to a final decision. My wife had to sign for my open surgery where she acknowledged that we would not father any more children.

In my case (different than yours) with RP at 50 and SRT at 56, I never experienced incontinence but ED. The fella never pointed again to the 2 o’clock direction. We have been enjoying it at the four o’clock mark with good attempts. I have experienced colitis in the first 4 months after RT. The apparent side effect from the treatment in 2006 is a loss of sensation when passing stool but I am still continent. Now on HT I am experiencing reduced libido significantly.

I wish you luck in your journey.
VGama

bmc
Posts: 1
Joined: May 2012

Don, I was diagnosed at a very young age (48yrs) and was thinking the same way you are, but with further research and speaking with Urologists/Oncologists robotics IS the way to go. I personally did not have to have that procedure but did have invasive procedure done. No pain and I was released from hospital 24 hrs. later. Do not wait. I had advanced stage Cancer and waiting is not to avenue to take. Your in and out in no time and the recovery is short. Do not hesitate. 18 months recovered! Best of luck

powellst
Posts: 5
Joined: Feb 2012

Don,

After reading your opening paragraph, I said "that was exactly how I was thinking and feeling" after being diagnosed in Nov 2011 @ 45. I also had a gleason 7, (3+4) with 2 cores positive of 16, with 5% and 11% involvement. I did not like at all the side effects of surgery, be it open, laproscopic, or robotic. I couldn't stand the fact that I'd have ED or be incontinent after surgery. Although stats were good for regaining both the earlier age surgery was done, I still didn't like the results. I wasn't ready to take that chance, and thought, maybe I should let nature take its course. After flip flopping on my decision several times, I opted for low dose brachytherapy. I liked the very high cure rate and low side effects. I had 87 Palladium 103 seeds implanted on Jan 18, 2012 at UT Medical Center. After finalizing my decision, I researched travelling to have Dr Merrick in Wheeling WV or Dr Dattolli in Sarasota, Fl do the procedure. However, I was very comfortable with the RO at my local hospital, Dr Daniel Green of UT Medical Center. He has done over 3000 implants since 1999, and was having very good results. My initial PSA was 3.8 prior to the procedure, and short of 3 months has dropped to 2.2. My next testing is in July, and hoping to be in the 1.? range or below. My only side effects were a few weeks of urinary urgency and burning, weak stream, etc. But that has mostly resolved now, I'm pretty much back to pre-implant in those areas, and have sufferred no ED issues. Still have regular and frequent sex with my wife.
So far, I'm pretty thrilled with my treatment choice....

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Don, hello I am a new member on here, but an unwilling member of the PC club. I was diagnosed with PC at the age of 60. My gleason score was the bad 7 the doctor took 18 samples from me and the results were all positive. There was between 40 to 60 percent of the sample had cancer cells. Now my urologist also informed me that I had the agressive type of cancer. My wife and I met with the doctor to talk about treatment options. This doctor took an hour of time and described each option and the side effects. Keep in mind that all options have side effects. The Doctor is a very good urologist. He explained to me the need to get treated. In an older male this cancer tends to be confined to the prostate and does not spread as quickly. Some types of PC are slow growing and it takes a long time for it to do damage. In a younger male this cancer tends to spread it does not stay in the prostate. When this spreads it causes problems. Now my doctor explained to me that the robotic surgery was the best option in my case. He said that I was in the early stages and that it was still easy to treat. I had the surgery with the nerve sparring. The first 2 weeks after surgery was slow going, but for me bladder control was real good I had a couple of accidents, not major. It has been a year now and I am doing good for the most part. The quality of life issues, ED is slowly starting to get better. My doctors spoke to me about this and indicated that this can take 1 to 3 years before things get back to normal. That being said I am thankfull that the cancer has been taken care of for now. But everyday it is on your mind. My reason for doing the surgery was the agressive nature of my cancer and there is that chance of a longer life???? but who knows. The other types of treatment center around one's age, health, and cancer stage. My father has PC and they placed seeds into him, but he's 88 years old. Do you research, but donot ignore PC because it will get you. A person at work had a family member die from this 6 months after he was diagnosed. Remember that PC is called the silient Killer in men. For the most part it has been an intense year for me. But I am thankfull. Sorry to here about this, Cancer sucks

Don_Carlos
Posts: 5
Joined: Apr 2012

My current concern is that if the cancer is outside of the prostate (positive contour), it might kill me anyway, and the surgery, although it may extend my time, may upset the quality of my remaining life. They tell me they think it is probably confined to the gland, but there seems to be a lack of diagnostics to provide certainty that is the case. I feel like there should be an MRI, or cat-scan, or something more done to find out if it has metastasized. But the doctors say such procedures would be inconclusive and therefore unnecessary.

Any comments or suggestions?

MTIVVC
Posts: 5
Joined: May 2012

Had the MRI, the bone scan, and CT PRIOR to the Davinici...all showed negative/no hot spots...still pathology showed an Gleason 9(started with a biopsy reading of 8, then downgraded to a 7, now a 9---go figure)

...seeing Dr on follow up next week...to discuss the results in depth...

Diagnosis paralysis is overcome by the following question...WHAT GIVES ME THE BEST CHANCE TO BEAT THE BEAST, or, AT LEAST KEEP IT CONTAINED THE LONGEST?...

Try some humor...find things to laugh about...here are few of mine...the incontinence issue was seen as...learning to potty train myself(at 6'8" tall!!!)...this is a very interesting 'surprise' once the catheter comes out(hint, I was changing the pad for the first time in the stall of a public restroom, stood at the 'normal' distance BEFORE surgery, and when I went the first time...I MISSED EVERYTHING...the flow was THAT STRONG!!!)...final chuckle, once you start using the pads, you may find it hard to fart with out leaking-so go sit on the throne until you get better for crying out loud!!!)

On a sharing basis...the biggest issue I had was the DRY THROAT from the anesthesia tubes...BRING THROAT LOZENGES...cough drops with MENTHOL will help surpress any desire to cough or sneeze the first day...do be very aggressive to get ICE in cups with a spoon...they gave me a 1/2 of a shot glass of water initially(I sounded like an obscene phone call for the first 12 hours!!!)

Relax, if you did your due dilignece on the surgeon, you should look forward to the waking up time...thing is, the nurses, if cute, get to see more of us, than our spouses...do forget any possibility of being...shy...aint gonna happen...get up and walk...walk some more...

Worst part once home, was trying to get the 6x a day walk...with a catheter...just aint the most pleasant thing...irritating as hell at the tip...but, the day it is removed...well, other than my wife saying yes to my proposal, my sons being born in front of my eyes, was the happiest day of my life...LOL...need more...recycle back to the start of this post...CHUCKLE...

MTIVVC
Posts: 5
Joined: May 2012

...comes down to finding THE BEST treatment the DR would use on himself...to stack the odds in your favor...

All this beast does is take that foggy concept of not getting out of this life alive, and crystalizing it to a timeline...that timeline is a function of mental attitude and humor...wife and I have had the normal angst...but we are having some fun with some things...

The fear of incontinence...look at it as potty training your self again...but only if you can laugh at it...

The wife, arguably, after 36 yrs is best friend looks awesome(think ****!!!...and I have)...thing is, we stored up enough sex to last a few months...again, look at it with humor...

Worst part for me after two weeks post DAVINICI...trying to pass gas...and not leak!!!...

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Don, I know what you are going thru. The quality of life has changed, it changed for me the day I was diagnosed with Prostate cancer. After the consultation with my doctor, I opted for surgery as this was the best treatment method for my cancer. The doctor informed me that there is always a chance of this spreading, but if treated early enough the success rate is good ??? Surgery for this cancer is straight forward, but it took me 6 weeks to recover before I could return to work. The cather was not a big issue for me. I had good bladder control, but still had the leaks, this has gotten whole lot better over time. There is an exercise that you do before surgery the will strenghten the muscle group by the prostate. ask your doctor about this. My doctor explained to me that one of the first points that this cancer spreads to is the lymph nodes and the bone. Now part of my surgery he removed the lymph nodes by the prostate and had a pathology ran on them. This came back clean. The pathology report after surgery is very important, make sure to get copy of this. This has been a intense year for me. I had a person at work sum this up as "you have gone thru a life altering event". At this point in time I am thankfull for every day. This past year I have been on a constant 6 week cycle of lab test's and doctor visits. Cancer changes your life. For the most part I am a fighter I donot back down from things. So far this has been one intense battle. Keep up the fight and donot let this drag you down. To this day I have questions about if this cancer has or is spreading and what's going to happen if it comes back. I just live a day at a time now.

rch
Posts: 78
Joined: Nov 2011

Don
You received some great advice or suggestions from other members on this forum. Just to add my two cents, currently there are no imaging or lab tests to conclusively determine extra capsular extension(ECE). If your concern is ECE with a GS 7, you would probably have to research some more on ‘open’ vs ‘robotic’. Please do not dismiss 'open' procedures as being outdated or prolonged recovery etc. The basic steps of both procedures are the same. It’s the skill of the Surgeon that is paramount. Nonetheless, if you do find a very caring Robotic Surgeon who doesn't use a 'website' to attract patients, and who has done a few hundreds of procedures on a REGULAR basis over the preceding 8-9 yrs ( not just in the past 5 yrs) with a good track record of success over the years,you might consider that approach. I'm fighting this decision myself.Just to give you some complexity of surgical approach, please read the article and pay special attention to the 'prostatic capsule and fascia'

http://www.urosource.com/fileadmin/European_Urology/Collaborative_Reviews/2010/Walz__coll_rev_PP.pdf

Platinum Priority – Collaborative Review – Prostate Cancer
A Critical Analysis of the Current Knowledge of Surgical Anatomy
Related to Optimization of Cancer Control and Preservation of
Continence and Erection in Candidates for Radical Prostatectomy
Jochen Walz a,*, Arthur L. Burnett b, Anthony J. Costello c, James A. Eastham d, Markus Graefen e,
Bertrand Guillonneau d, Mani Menon f, Francesco Montorsi g, Robert P. Myers h,
Bernardo Rocco i, Arnauld Villers j
a Department of Urology, Institut Paoli-Calmettes Cancer Center, Marseille, France
b James Buchanan Brady Urological Institute, Johns Hopkins Medical Institutions, Baltimore, MD, USA
c Department of Urology, University of Melbourne, The Royal Melbourne Hospital, Parkville, Australia
d Department of Urology, Memorial Sloan-Kettering Cancer Center, New York, NY, USA
e Martini Clinic – Prostate Cancer Center, Hamburg, Germany
f Vattikuti Urology Institute, Henry Ford Health System, Detroit, MI, USA
g Department of Urology, Universita` Vita Salute San Raffaele, Milan, Italy
h Department of Urology, Mayo Clinic, Rochester, MN, USA
i Division of Urology, European Institute of Oncology, Milan, Italy
j Department of Urology, Centre Hospitalier Re´gional Universitaire de Lille, Lille, France

djs123
Posts: 102
Joined: Jan 2012

Hi Don
Welcome and sorry you're here. I've just been catching up since I've been off the site during much of my husband's treatment. I came across your post and wanted to add a few things. Also please read my earlier post... subject (New Here Woo Hoo).

You have received some excellent advice. I think the primary issue is you must feel confident in your doctors. One thing I did was contact John Hopkins and discuss my husbands options with them, (we sent his lab work there for a second opinion). they were incredibly helpful and discussed various methods of treatment. In the end all the experts agreed on the method my husband actually selected IMRT and HT, however he is 79 and that played into the treatment recommended. Don't recall if you mentioned your age.
He was diagnosed in Massachusetts and since we were coming to Florida wanted a doctor here. Head of urology in a Mass hospital gave us a referral, so we made an appointment.. When I called Hopkins they referred us to the same doctor in Florida. We both breathed a sigh of relief and felt a sense of yes this is the right doctor.
That's so important, you must have faith in your physicians.

Good luck to you and God bless
djs

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