Treatment options with diagnosis at relatively young age.

Welcome to the club and
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't Rush Into It!
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 said:

Deep Breath
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

With an initial report of a
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.

ralph.townsend1 said:

Time ???
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

Any Image study Result?
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 said:

You are right Vasco
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.

Don well spoken. I admire
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 said:

Don,
This is my take on it
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.

There are many unknowns in PCa matters
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

Know where you're coming from
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....