I have to be honest. In hindsight, I may have given more serious thought to other treatment methods. Let's face it, when you are making the decision for which prostate cancer treatment to choose, your attending urologist has a great deal of influence on your thinking. Right? My urologist is a surgeon. If I would have decided against surgery and opted for another treatment, he would lose me as a patient. That's not how you make money for your practice. How much selling did he do in favor of surgery? How can you tell when you are still reeling from the residual shock of learning that you have prostate cancer? I venture to say most guys are not in full control of their emotions to make such a life altering decision. Was my urologist being fully and completely objective about his conduct when he was discussing my options? Who knows? All I kept hearing was him saying, "Surgery has proven to be the best treatment for younger men like yourself."

As it turned out, my experience was positive for the most part and I am cancer free at this point in time. I just wonder how many others out there may have misgivings about their experience and, given another chance, would they do things differently?

Thoughts anyone?

Comments?

:confused:

able5,

Short answer: I'd do it the same way again. As was yours, my uro was a surgeon too and said the same as yours. But...he told me on several occasions that I should do enough research to make my own decision. Which is what I did.

Yes, it was difficult to keep the emotional aspect at bay, but for me there was a logical progression in my decision process. I wanted to have second and third options if the RRP didn't get the "cure". Even though the RRP caused my leg lymphodema and put me on pee pads 24/7 for just over seven years now, I still believe it was the best procedure for me.

Now, how much of the preceding was a rationalization of a decision that cannot be undone I cannot say, nor at this point in my life do I even want to know. But I think I'm being honest about my mental processes when I tell you that it's the same thing I'm going to do with the diagnosis I just received yesterday.

I fully intend to be the one making the medical decisions concerning how to combat the B cell lymphoma I've apparently been walking around with for some time. If you can believe it, this form of the big C is even more confusing to deal with than the PC we write about on this board.

Sometimes the best we can do is to make an informed decision and accept the results knowing there's little certainty in many human endeavors.

Hi again Able ,
you are right in a way by second guessing yourself at times , we all do go through the same process , however we all would probably would still take the same road over and over , as humans it is a known fact that we repeat our behaviors in life , even if our decisions proven wrong, i heard the same lines from my Uro which wa my performing surgen as well , but he truly laid out all my options for me very clearly and advised me to make my research and go for some other opinion , and even made an appointment for me with the radiologist for his opinion about radiation treatmen.
The radiologist himslelf even not being a surgen , advised me to go for surgery, and after research i took that route as you did , i am as you know in the mids of the recovary process and i hope i will recover as you did and never regret my decision or second guess it , but in few discouraging occassions i DID second guess myself and kept asking if i should have gone other ways (such as Robotic Vs. my open surgery or even radiation..) but only time will tell how fast my recovary will be and i do hope that i will not regret it.
Thanks again for the thoughts its always help to share them with others.

My case is a little different. I had nine years between my first high PSA and biopsy (negative) and the third biopsy which was positive. I remember how scared I was waiting for the results of that first biopsy. I started researching treatments available in 1998 and was horrified at the high incidence of incontinence and ED (33% to 50%).

In the intervening years both my father and brother were diagnosed with PCa. My brother had laparoscopic surgery in 2001 (this was before robots) that went bad and was converted to open. He is still wearing pads. Given the family history and my gradually increasing PSA I assumed that PCa was inevitable. So, I kept a file on advances in diagnosis and treament.

My urologist was a surgeon, but he was also a counselor. He was available to discuss treatment options for BPH as well as PCa. I even sent him a letter thanking him for nine years of counseling. He's does 2 to 3 open RP's per month, told me surgery was best for me and that I would not get any better results with robotic, except maybe recovery time. He had no statistics or records of his ED or continence results.

After a final review of available treatments I agreed that surgery was the way to go for me, but that it was going to be done by someone with a lot more experience than he had. I chose a robotic RP and a highly experienced surgeon with good numbers (97% continent within a year). The surgery went amazingly well. No problems. Little discomfort. Dry at nine weeks and working on the ED thing. Post-op pathology was good and I'm about to get my first post-op PSA. I expect that to be good, also

I have no regrets, but then I had nine years to think about it.

Kemahsabe,

I liked the fact tha Dr. Slawin in Houston, had over 1000 operatons with robotic RP, and had the same side-kick. I also noticed he uses a slightly different approach something about intrapara. vs extrapara??

I was curoious what doctor you recommend and who you did your surgery.

Thanks,
Harry57

Kemahsabe,

I liked the fact tha Dr. Slawin in Houston, had over 1000 operatons with robotic RP, and had the same side-kick. I also noticed he uses a slightly different approach something about intrapara. vs extrapara??

I was curoious what doctor you recommend and who you did your surgery.

Thanks,
Harry57
Harry,
Dr Slawin did my surgery. When possible he uses the extraperitoneal approach, meaning the laparoscopic instruments do not penetrate the peritoneum (The membrane that lines the abdominal cavity and covers most of the abdominal organs). This is less invasive and results in less discomfort and a few days quicker recovery. Also, he spends extra time "reconstructing the continence mechanisms", to which I attribute his high continence recovery rate. It's all on his website and well worth the read.

I would do it again.

I was 48 with PSA in the 4.6 area and 2 positive cores on my biopsy. It apparently was caught early (and luckily since I had no family history). I wanted it out and methods other than surgery struck me as imprecise.

My uro/surgeon apparently got it all out in an 'open' RRP. I had some problems with stricture/bladder neck obstruction but have gotten used to peeing in the 'hovering' position above the toilet and have no leakage. I also have full erection capability and go tomorrow for my 5th post-surgery PSA test, which hopefully will be as clean as the others have been.

The only thing I'd do different is go for the robot, which came to town here in WV a year too late for me.

Hi Able5:
I agree with all previous posts. Had my open RPP in 2001 at age 69 and never looked back. Did my research as you all did and decided surgery with a woldr class surgeon was the way to go. Never experienced one days incontinence or leakage although ED was a problem which took several months to overccome with the help of Viagra and the VED. Still need the VED most times for the final firmness.
Part of my research was learning that all my Dr. friends and they're quite a few who were not uros opted for surgery when they developed P.C. including two radiologists. Their reasoning was that if surgery failed radiation was still a back up option but not the other way around. Also the same side effects occur with radiation both seeds and external beam although there's a delayed onset. Radiation can also result in bladder, sphincter and bowel (proctitis) problems which may require surgery to fix.
So I never had regrets and would go the same route again. My rule with any operable cancer is cut first and burn or poison later only if necessary.

Thanks to all who took the time to post their opinions. Since this is an anonymous forum, I get the distinct impression that you have all tried to be candid about your specific experience. It's my hope that guys getting dx'd with PCa in the future will read your comments and realize that, in most cases, there's time to do the research. There's time to make an informed decision. There's time to consult with other professionals. There's no need to panic and make a hasty decision. I am thankful that my primary family doctor (PCP) guided me to the right urologist for my treatment. The also thank my PCP for catching this thing in the early stages. It just goes to show that early detection is your best chance to beat any form of cancer.

Again, thank you for your replies and your sage advice.

:angel:

I started off convinced that surgery was the way to go, but after extensive research and discussions with probably 50 past and present patients (both surgery and other treatment forms) I chose proton radiation. I had been posting on this board but have been absent for about 1 1/2 months.

I'm now about 50% through with my 8-week regimen at University of Florida Proton Therapy Institute in Jacksonville.

No regrets. Once I had my initial consultation here, I moved quickly away from any more serious consideration of surgery. Those other prostate patients here had also done lots of homework, and with rare exceptions, were NEVER told about this place (or one of the other four, the most prominent being at Loma Linda, where they've treated over 7000 prostate patients since 1990) by their urologists.

I started off convinced that surgery was the way to go, but after extensive research and discussions with probably 50 past and present patients (both surgery and other treatment forms) I chose proton radiation. I had been posting on this board but have been absent for about 1 1/2 months.

I'm now about 50% through with my 8-week regimen at University of Florida Proton Therapy Institute in Jacksonville.

No regrets. Once I had my initial consultation here, I moved quickly away from any more serious consideration of surgery. Those other prostate patients here had also done lots of homework, and with rare exceptions, were NEVER told about this place (or one of the other four, the most prominent being at Loma Linda, where they've treated over 7000 prostate patients since 1990) by their urologists.

daff;

It's regretful that the treatment you chose is not yet more widely advertised by the health care industry. I suspect that, because this therapy is relatively new to the treatment scene for PCa, most health care providers don't see an immediate benefit ($$$) and so they tend to steer their patients to the treatments where they can make a buck. When you temper your logic and reasoning about treatment methods, one needs to be constantly aware of the fact that, here in the USA, profit rules. Here in the USA, Cancer is a massive industry. Lot's of people make lots of money in the cancer industry. The health care industry has no vested interested in any treatment for cancer that might hurt the industry and diminish the vast profit that is available. So, as long as the money keeps pouring in, they will continue to perpetuate this industry as is. I believe that's why there's no rush to discover new treatments. My insurance company views proton radiation as an "experimental treatment". They won't pay for this treatment until it's more widely accepted and more widely available. Guess what? My insurance company is advised by doctors and hospitals. Get my point?

:(

from the first meeting with the guy who did my biopsy, no medical professional tried to steer me to any one particular treatment. the biopsy doc, a urologist and robotic surgeon, even referred me to a radiologist to consult regarding radiation therapy. the doc who ultimately did my surgery -- he was a urologic oncologist; that was the title on his door -- gave me a written report on our consultation which said i was a good candidate for any of the surgical procedures, or for radiation, or even cryogology. [i think that's the term.] but the precision associated with surgery, and the diagnostic metrics surgery provides, appealed to me and surgery is the way i went. i think i made the decision -- with my wife's help -- and i don't think anyone in the medical industry tried to unduly influence me. and yes, i'd go this way again.

my own research found some mention of proton therapy but i never considered it and i don't think anyone i talked to mentioned it.

my own research found some mention of proton therapy but i never considered it and i don't think anyone i talked to mentioned it.


You were indeed lucky to find "some mention"...

Unfortunately, I found none at all. Again, I was provided all my reference material regarding all of the treatments available to me from my doctor as they are detailed in my insurance plan".

I guess it's all about the "haves versus the have-nots".

In other words, money talks, BS walks!

daff;

..... My insurance company views proton radiation as an "experimental treatment". They won't pay for this treatment until it's more widely accepted and more widely available. Guess what? My insurance company is advised by doctors and hospitals. Get my point?

:(

I agree that this is expensive treatment, but a majority of insurance companies are now covering this, although it may take some effort on the patient's part. (The HMOs are the more difficult to deal with on this.) What I don't understand is your insurance company viewing proton treatment as "experimental" given that it's fully covered by Medicare now and has been used since 1990, with Loma Linda having treated over 7,000 prostate patients. It's clearly not experimental and not getting covered for this reason should be an easy objection to overcome. I think insurance company reps are trained to say "no" for many inquiries, and it's not until they're pressed, challenged, and can get a supervisor involved, that they reverse the original reply. They figure most people get tired of the hassle and just go away.

my own research found some mention of proton therapy but i never considered it and i don't think anyone i talked to mentioned it.

I'd say you got reasonably good information, but not enough-- since what I and many patients getting proton treatment believe is that with few exceptions, proton treatment is likely the best treatment one could choose today. It requires 8 weeks of relocating to where one of the centers is, so that's often a reason that many cannot or will not do this.

By omitting to mention this treatment, your doctors were not open with you.
And I'd say you didn't do enough research if you didn't take the time to find out more for yourself. I understand why one size doesn't fit all, but without
considering everything, how can you be so sure you made the right choice?

They figure most people get tired of the hassle and just go away.


Bingo! Me thinks that you broke the code to health care in the good old USA. But let's not talk too loud, I don't want to see my stock holdings plunge in the health care sector. Growth and earnings have never been better! This capitalism is the greatest! Let's leave things exactly as they are with regard to America's Health Care Delivery System.

Am I making myself clear?


;)

By omitting to mention this treatment, your doctors were not open with you.

Hard to believe...

:rolleyes:

Have you seen this?
Surgery Offers Best Survival for Prostate Cancer
Type of therapy may have little impact on the 5-year survival rate from prostate cancer but at 10 years, survival difference emerges

By Anthony J. Brown, MD

Monday, October 8 (Reuters Health) - Removal of the prostate gland, a surgical procedure also known as "prostatectomy," offers longer survival rates than radiation therapy, careful monitoring, or hormone therapy for men with "localized" prostate cancer, a common form of the disease in which the cancer has not yet spread to other organs, new research shows.

"We observed that prostatectomy was associated with the best long term prognosis -- in particular, for younger patients and patients with (aggressive) tumors," senior author Dr. Christine Bouchardy, from Geneva University, Switzerland, told Reuters Health. "We are not very surprised that prostatectomy offers the best chance of cure at long term, but we should wait for results from (clinical) trials to confirm this."

The study, which is reported in the Archives of Internal Medicine, involved 844 men with localized prostate cancer, including 158 who underwent prostatectomy, 205 had radiation therapy, 378 had careful monitoring and treatment if needed, 72 received hormone therapy, and 31 had other types of therapy.

In general, the type of therapy had little impact on the 5-year survival rate from prostate cancer. The exception was treatment with hormone therapy alone, which resulted in a worse 5-year survival than the other therapies.

At 10 years, however, the survival differences emerged between the groups. Patients treated with radiation therapy or followed with careful monitoring had prostate cancer-related survival rates of 75 and 72 percent, respectively, whereas for those treated with surgery it was 83 percent.

Further analysis showed that the inferior survival seen with radiation therapy and close monitoring was largely confined to patients younger than 70 years or those with aggressive cancers.

"According to this study, surgery appears to offer prostate cancer patients the best survival chances at long term," Bouchardy said. "Given the lack of consensus on the best treatment for patients and the important therapeutic disparities in routine health care practice, results of this study can help patients and practitioners in their decision making."

SOURCE: Archives of Internal Medicine, October 8, 2007

No one should be surprised and no one in the medical field is. The overwhelming majority of Dr's opt for surgery when they develop prostate cancer.

I have to be honest. In hindsight, I may have given more serious thought to other treatment methods. Let's face it, when you are making the decision for which prostate cancer treatment to choose, your attending urologist has a great deal of influence on your thinking. Right? My urologist is a surgeon. If I would have decided against surgery and opted for another treatment, he would lose me as a patient. That's not how you make money for your practice. How much selling did he do in favor of surgery? How can you tell when you are still reeling from the residual shock of learning that you have prostate cancer? I venture to say most guys are not in full control of their emotions to make such a life altering decision. Was my urologist being fully and completely objective about his conduct when he was discussing my options? Who knows? All I kept hearing was him saying, "Surgery has proven to be the best treatment for younger men like yourself."

As it turned out, my experience was positive for the most part and I am cancer free at this point in time. I just wonder how many others out there may have misgivings about their experience and, given another chance, would they do things differently?

Thoughts anyone?

Comments?

:confused:

i just found this board i wish ui did more resherch because at 49 i still cant have sex with out the injection it has been two years and i was told at my age i should get it back no ins company helps pay for the injection so cant do it very many time i need to know if and when should i think about am implant my dr said after two years but i really dont know plus i am a single thank u for letting me vent

i just found this board i wish ui did more resherch because at 49 i still cant have sex with out the injection it has been two years and i was told at my age i should get it back no ins company helps pay for the injection so cant do it very many time i need to know if and when should i think about am implant my dr said after two years but i really dont know plus i am a single thank u for letting me vent

Thanks for posting about your "SEXUAL HEALTH - MEN" problem on the "CANCER: PROSTATE" forum.

"PROSTATE CANCER" is a very serious condition in men. It's one of the leading forms of cancer in men. Some treatments for "PROSTATE CANCER" can cause conditions related to ED.

Do you have prostate cancer?

Again, I appreciate your comments about your sexual health problem here on the "CANCER: PROSTATE" forum.

Best wishes...

:angel:

I have to be honest. In hindsight, I may have given more serious thought to other treatment methods. Let's face it, when you are making the decision for which prostate cancer treatment to choose, your attending urologist has a great deal of influence on your thinking. Right? My urologist is a surgeon. If I would have decided against surgery and opted for another treatment, he would lose me as a patient. That's not how you make money for your practice. How much selling did he do in favor of surgery? How can you tell when you are still reeling from the residual shock of learning that you have prostate cancer? I venture to say most guys are not in full control of their emotions to make such a life altering decision. Was my urologist being fully and completely objective about his conduct when he was discussing my options? Who knows? All I kept hearing was him saying, "Surgery has proven to be the best treatment for younger men like yourself."

As it turned out, my experience was positive for the most part and I am cancer free at this point in time. I just wonder how many others out there may have misgivings about their experience and, given another chance, would they do things differently?

Thoughts anyone?

Comments?

:confused:

I'm only four weeks post surgery, and I have run into a few complications, one of which resulted with a week long return engagement at the hospital. (I now know all the nurse on a fist name basis, and am planning on bring a nice assortment of goodies on my six week followup) I also suspect I still have an internal leak that is causing an internal infection. I just keep repeating the mantra "It will seal itself".

Would I choose to have my prostate removed again at my tender young age of 42? In a heart beat. I watched my father die of prostate cancer, and is was not pleasant at all. I was actually concidering having it removed last december on a proactive basis, as I am done fathering kids.

By priorities were

1) LIVE past 50
2) Not have to were a diaper for my remaining days
3) Be able to have a healthy sex life.

To be honest the only real one I want was the first. It was a "NEED to have", while the others were only "WANT to have" items. While I like sex A LOT, I can live without it, if it means I live!! I can pleasure my wife in a multitude of other ways.

Just my thoughts.

Asked my husband this and given our great results, he would definitely chose Open RP again. Only way to know, after they slice and dice, where the cancer was, how bad, if it is gone, and have the confidence that things didn't spread. His answer. Given we are watching his dad dying, this was VERY inportant.

I did ask his surgeon straight out. If this was you, what would you do. He went on to tell me Open RP and named the surgeon. Told me all the reasons why. Some are what I stated above. Given that he is one of the top experts in the country on PC, that worked for me. He is reknown in his research and symposiums on the topic and is leading edge. I did ask him about all the traditional treatments and included proton and HIFU.

That was our choice. :)

And I should state, cost was no issue. Either way, insurance or not. We wanted what was best and could pay for it directly if we needed to. Location was no issue. My husband and I are fortunate to be able to take the time at any location that was needed. It was strictly choice.

Has Anone Out There Have Had A Implant Or Have They Talked To A Dr And How Long Should U Wait Thank U

Has Anone Out There Have Had A Implant Or Have They Talked To A Dr And How Long Should U Wait Thank U

Implant?

Do you mean, penile implant?

:confused:

Implant?

Do you mean, penile implant?

:confused:

yes an penile implant

yes an penile implant

Oh, okay...

I found some real interesting reading about those types of topics over on the "Sexual Health - Men" forum.

Great stuff over there. If you haven't been there, you are missing a real adventure.

Thanks again for visiting with us here on the "Prostate Cancer" forum.

Best wishes...

:angel:

As a new participant on this board it was interesting to read the replies.

I knew right off that my case was challenging. I had a PSA of 113.6 (first ever at age 56 in December 1999) and a biopsy of all cores positive, most 100% cancer, GS 4+3=7, with perineural invasion; the stage was 3 with a "rock hard" prostate per the DRE. :confused: However, my CT and bone scans were negative, and I felt fine, with no symptoms except nocturia.

I did what I thought was adequate research, including reading ACS materials (bless them!) and the latest booklet from the National Comprehensive Cancer Network. With a lot of encouragement from well meaning but not so well informed friends, I took about two weeks to decide on surgery at a nearby world-class surgery institution, basing my decision primarily on the odds of success that I had read.

I was stunned and crestfallen when they told me I was not a surgery candidate! :( Of course, I soon learned they were right. They did offer radiation when I successfully hurdled a ProstaScint scan (then without fusion), and I prepared for that, having three preparatory consultations. However, I kept learning more about hormonal blockade, and a couple of weeks before starting the radiation, I first learned about tripple hormonal blockade. Concerned about the side effects of what would have involved a hefty pelvic dose, and encouraged by encouraging information about triple blockade, I decided to take my chances with blockade.

I have been awed and delighted with the results, though it has not been a cakewalk. :) My PSA dropped more slowly than for typical blockade patients with better case characteristics, but I was able to get it to below 0.05 for a year and reach a nadir of < 0.01 before starting my first off-therapy period after 31 months on full therapy, including Fosamax to protect bone density against that side effect of blockade. I was off full therapy for 34 months, regaining substantial testosterone in about three months, thereby recovering from most of the quality of life hit, which had been acceptable but not desirable. At the six months point my quality of life was virtually the same as before diagnosis.

While it now appears, based on slim but impressive evidence, that many low-risk patients apparently need only one round of about a year on full blockade to achieve excellent and long-term cancer control, I experienced a PSA rising well above that expected for a recovering prostate during off-therapy with predominantly normal tissue. As with a minority of higher risk patients, it was clear I needed to resume blockade. I stayed on full therapy for nineteen months, again achieving a nadir of < 0.01, and am now in my eleventh month "off therapy," with finasteride maintenance and Fosamax also in support. I don't know how many more months I can coast, but my quality of life is again excellent. :) I have learned that for most of us the side effects of blockade are tolerable and often largely manageable.

I have learned that low risk patients have a multitude of options that will probably be curative, but higher risk patients need to take care in tailoring therapy to the contours of their cases.

I did not expect to be on earth at this point, and I am profoundly grateful.

Hey Jim;

It's been a while since I have read a well written post about a first hand experience. Thanks for taking the time to share. Obviously, your journey has not been an easy one. You sound like an educated and well read guy with a great vocabulary so I was surprised when you said you had not been screened for prostate cancer until age 56 in 1999. Did PSA screenings exist back then?

Hey Jim;

It's been a while since I have read a well written post about a first hand experience. Thanks for taking the time to share. Obviously, your journey has not been an easy one. You sound like an educated and well read guy with a great vocabulary so I was surprised when you said you had not been screened for prostate cancer until age 56 in 1999. Did PSA screenings exist back then?

If I had it to do over, I definitely would have had PSA tests and DRE exams much earlier so that I would not have found myself at the edge of a precipice when I was diagnosed.

PSA tests were indeed available in 1999 and in fact there had been a rapid rise in diagnosed cases of prostate cancer in the late eighties through early nineties following the FDA's approval of the test in 1987. There goes my shot at that excuse.

I wasn't tuned out and did know about the PSA test, though I had never heard of a DRE. But what I was hearing was equivocal, with reports of doctors who said the PSA was of little value about as frequent as reports of doctors who favored the test. Also, I was in my early fifties then as I closed in unaware on my first PSA test at age 56. My grandfather had died of PC but late in life, and I did not realize his cancer was prostate cancer. My father had also died of the disease, but he too was diagnosed in his seventies and survived ten years. I was leading a better lifestyle with ample exercise, enjoyed generally fine health and had a good diet, so I assumed I was at low risk, not then knowing a whole lot about the disease or really caring. (Has that ever changed!)

One day as I approached a nearby high school track where I racewalked regularly, after hydrating in preparation for the workout. I suddenly felt an urgent need to pee like I had never felt before. I made a beeline for the Johnny-on-the-Spot, fervently hoping the door was unlocked. It was, but it made me think and decide to get a physical that I'd been putting off for several years. The doctor said I was fine and rose from his chair to see me out. I said, "Shouldn't I have a PSA test?" He said he did not think it was necessary, but he would write a script for it if I really wanted it. Three days later I was in the office again for an allergy shot, and the somber looks on the faces of the staff caught my attention. The doctor called me into his office, slid the test result report across the table to me, and just let me take it in. I was confused as I didn't see a score in the range of up to 10 that I expected. I noticed the 113.6 but thought it was a serial number. Then I realized what it was and my world changed. :( Needless to say, the doctor was pretty embarrassed, especially since I had listed my father's death from prostate cancer on the history sheet.

I am disturbed that many doctors are still telling their patients that the PSA test may not be helpful. In fact, the US Preventive Services Taskforce, an official Government group, was opposed to PSA testing up to a few years ago; at that time they changed their stance to neutral. Fortunately, other respected groups like the ACS encourage men to be tested.

Jim

An estimated 1.6 million U.S. men each year have biopsies after positive PSA tests and 80 percent have no cancer. Conversely, some 15 percent of men with prostate cancer showed negative PSA results. Any wonder why there's not much faith in PSA tests. Yet, until a new tool comes along to more accurately screen for prostate cancer, I guess we must be thankful that we at least have something. Who knows, my Dad might still be alive today had PSA screening been around in the 1970's.

:)