Why We Chose Our Treatment Option

I chose Radical Retropubic Prostatectomy (RRP) sometimes called "open" surgery because:

1) I wanted the cancer out of my body as soon as possible. I had watched my father die from metastisized PCa. It took a year and a half and I decided then (1985) that if I ever got diagnosed, I would get rid of it as early and as quickly as possible.

2) I didn't want to wait for my PSA to drop and the side effects to show up later. It seemed to me that getting everything settled up front would give me more peace of mind - and it has.

3) Continence: I could hold my pee as soon as the catheter came out. I've a few small leaks now and then but they have gone away, for the most part, with Kegel exercises and my learning how my new plumbing works. After the swelling from the surgery went down (about 4 or 5 weeks) I could distinguish the various signals that my external sphincter and bladder were sending.

4) Potency: I had ED before I was diagnosed and was using Levitra to keep the erection long enough to finish the job. Since surgery, I have regained about 50% of an erection. Not enough to be useful yet but I can feel more sensations each week as the nerves heal.

I certainly am not pushing surgery as the only treatment option. Many here on HW have done much more extensive research than I was able to do.

Good luck and keep us posted on your progress...

Jim

Hey Guys,

I meant this to be a place where we could all explain how and why we chose our treatment option. Not just me.

Sorry for the confuseion. Maybe it wasn't such a good idea after all...

Jim

Jim

I think this is a great idea, I read everything on each thread here, but I don't contribute much because others have more knowledge than I do and all of the topics are convered so well there is not much for to add. I get alerts from Google about various PC treatments and I chose robotic because, as one of us said above, I wanted to get the cancer out of my body and I did not feel the seeds or radiation gave me that satisfactry result that everything was out. I have also read in a few different places that the seed treatment shortens the penis by 1" to 1 1/2' inches and I didnt want to lose anything, but that was a minor consideration.

I have also read (and confirmed it with friends that have had seeds and/or radiation) that while one may have some problems with incontenance and impotency in the first few months after robotic (and nerve sparing) surgery, one can over come that and lead a normal life afterward, but with the seeds and/or radiationi one would have fewer problems in the short term, but major problems later. I spoke with one older friend who had the seeds done 8 years ago and he thought it was great in the short term, but now he has not had an erection in over 4 years. The friends who had surgery seem to have better luck in the long term with a normal life without incontenance and ED.

I was haveing some ED problems before the PC problem and I found Cialis took care of that so well l that sometimes I did not need it and they started me back on Cialis just 8 days after surgery andthey ae going to keep me on that for a while.

Those are my reasons for robototic, we never know what is going to work for each of us and hind sight is great, but after a lot of research and reading everything on this site for a while I am happy with the direction I chose and the immediate results, after a very short time of recovery. Maybe in 6 months or 3 years I wont feel that way and I may wish I had had the seeds, but for now I am very optomistic that all will turn out well in the long run.

Hope I did not ramble on too much.

Mat

Completed Quote from Jetguy's Thread: Why I chose radiation   placed here with permission from Jetguy!! There seems to be more interest in radiation recently and since I seem to be the only guy doing EBRT (External Beam Radiation Therapy), I thought I'd let you know why.  If you have read any of my other posts, you will note that I have been careful not to push my choice of treatment and I don't intend to push it now.  In my thread Radiation - a journey, I have tried to factually describe what happens during my treatment and leave my emotions and opinions out of it.  That is the what and how and I hope this will describe the why.  I'm writing this because so many of the guys and gals have done such a good job explaining why they chose their treatments.  I thank all of you and you can believe that I read them carefully.  I came to this site before I knew that I had cancer, so everything written was very important to me. I am not a medical person and what follows is my opinion only.  You can bet that many of my fears and circumstances have no application to you.  I most certainly am not a medical expert and I wouldn't bet the ranch on my 'knowledge' - or should I say lack of knowledge. I trust my urologist a great deal.  Another doctor whom I have known for nearly 20 years told me that my uro is (in his opinion) the best in Dallas.  Much of what I say here is based on what my urologist has told me.  The list that follows consists of the treatments I considered.  I have listed them in the order that I rejected them.   Surgery At present, surgery is considered the gold standard.  My urologist had RRP 10 years ago and given my general good health, it's what he recommended for me.  He also told me that with my numbers, radiation would offer just as good a cure rate.  He said that I had a 98% chance of a cure whether I chose surgery, or radiation.  I abhor the thought of surgery.  It is my goal in life to never have any sawbones cut into my tender, pink body.  I personally know people who have had their throats damaged, have had serious infections, and have died from surgical complications.  I know  of a couple of guys who have had very long and painful recoveries from prostate surgery.  I know that surgery sometimes fails even when they think they got it all.  A close friend of mine died that way about three years ago.  With prostate cancer, the only thing for sure, is that nothing is for sure.  The side effects are well known. HIFU  High Intensity Focused Ultrasound This is very appealling.  Essentially, the cancer is burned up.  It's usually done in one session and if it fails, later surgery is no big deal according to my urologist.  Go to ushifu.com for more info.  I very likely would have chosen this if it were available in the U.S., if insurance would pay for it, and if I could find an experienced person to do it.  I even talked on the phone to a couple of people at USHIFU, but in the end dicided to stay in the States and let my insurance pay for it.  I have no knowledge of side effects, except that they are said to be minimal. Radiation   3D - Conformal It's 2007 and by now this ancient history.  I would not consider it.  Too much collateral damage. IMRT  Intensity Modulated Radiation Therapy Google IMRT - lots of info.  You can read technical descript ions elsewhere, but the idea of this vs. 3D - Conformal is fewer side effects and I think it is much better.  A sumulation is done (much like the one I described in Radiation - a journey) and the treatments are based on that.  This is a huge leap forward, but doesn't account for daily movement of the prostate and it therefore lacks accuracy on a daily basis.  Once I learned of Proton Beam and IGRT I didn't do much research on side effects, so I will refrain from comment.  If I lived in a place where my best choices were this and surgery, I don't know for certain what I would do.  I would reluctantly choose IMRT - I think.  Unless there was a local surgeon who had a ton of experience and was super skillful.  Maybe.  You get the picture.  Proton Beam Radiation I eliminated proton beam simply because it's not here in Dallas.  I think that it's just slightly better than IGRT.  The reality is that we are taking care of our grandson five days a week and the logistics of going to Houston, or Loma Linda were going to be very challenging.  I know three guys who have done this and they are thrilled with the results.  Please understand that this is radiation.  Protons are sub atomic particles and they do penetrate your body.  It's that most of the energy is in the Bragg peak and that is flattened to do useful work in a specific area.  The only side effect that I am aware of is some instance of loose bowel that resolves itsself over time. There may be more, but I am not aware of them. There will never be many proton beam facilities around.  It's my understanding that the new one at M.D. Anderson in Houston cost about 125 million bucks.  That ain't pocket change.  The latest and greatest IGRT comes in at well under 5 million.  IGRT   Image Guided Radiation Therapy Basically, this is IMRT with daily location of the prostate.  I had markers implanted because my oncologist uses x-rays to locate my prostate each day.  Some use ultrasound on the abdomen and some use CT scans.  I idea is to kill the cancer with minimal collateral damage to surrounding tissues.  It's my understanding that there are few urinary complications with this treatment, but there may be some bowel problems that usually, but not always resove over time.  A friend of mine still has a loose bowel three years after his treatment.  When he feels the urge to go, he needs to think about finding a bathroom.  In rare instances there can be severe complications.  It's my understanding that there is nearly a 50% chance of impotence within 18 months of treatment.  But if you're vertical and on this side of the grass, you won. Note:  It is incorrect that salvage surgery can not be done if radiation fails.  It may be difficult and not all surgeons do it, but it is possible. Summary Well, that's why I have gone down my particular road.  I hope you find my experience useful. Nothing is for sure, but I am happy and confident with my decision.   Be advised that any numbers you read regarding survival rates and cure rates and side effects that include anything other than IGRT is comparing apples to elephants.  Regards, Bill

   Hey Dave....   We understand where you're coming from with "personal threads" having the title specific to the individual...   I know lawink and I  stress this all the time…  but again "a personal option".....     but it don't hurt to ask!!  (chirp~chirp~chirp)   This "Thread" is going to be a little different… This Thread..... showing "all" different options and the reasons for "personal" decisions to go forward with a specific treatment.   Hope no one minds mama blue chirping.... but I talked with Biker90 last night and agreed 100% that this would be a perfect Thread.... to continually pop to the top too!!!    :) In Friendship ~ Lee        

The Treatment Decision
Before we met with the urologist I did a lot of research on what to do, read as much as I could and looked for messaged boards, unfortunately I didn’t find this one until I was all scheduled and ready to go. At first I read about the clinic in Georgia and their seed and beam radiation procedure and thought this was the way I would go, maybe not there but that treatment. Then I read about the surgeon in Florida who does hundreds of the laparoscopic procedures each year and the patients would be up and moving around the next day almost as nothing had happened. Well on November 15th 2006 I and my wife went to meet with the urologist and see what options we had. I had already did a lot of research and knew there were numerous options available, actually more overwhelming then learning I had cancer. He went over the numbers with us, PSA 6.22, 2 of 13 cores positive each 10% cancerous, 2 others suspicious, Gleason 3+3=6 and Stage T1. We spoke briefly about surgery and that he preformed the open radical surgery and completed about 20 to 25 a year. We talked about seed implants and external beam and would be happy to set up an appointment with the radiology department to go over those treatments. We also discussed laparoscopic surgery and Robotic surgery with the De Vinci. He told me they didn’t see any better results with those surgeries than the open procedure they did that warranted them going to either of those procedures. He also stated I was young, in good shape and his recommendation would be surgery because I should have 30 plus years of life and good health in front of me, this I did agree with. We talked more in depth of what he would do if he preformed the surgery and along with removing the prostate he would automatically remove the limp nodes and at least one set of nerves along with everything else, just the way he did it. He said I didn’t need to decide right away, I had time and I could call him next week. Well as we left the office and on the way home my wife and I had time to confer. God love my wife but being the worrier of the family was ready to schedule the surgery with this doctor and get the thing out. I said no, I had time and wanted to check with our insurance and a 2nd opinion. Also I had learned that even if I choose surgery and which method, the most important thing was to find an experienced surgeon who preformed many surgeries each year and 20 to 25 per year didn’t seam to meet that. Nothing against the doctor or the hospital, they are well known for many things and are very good at them, I just wasn’t ready to turn myself over to them in this case.
Sometimes fate steps in, in finding a few patients that had made the same type of decisions I ran into two others that had my same doctor locally and both chose to go else where. One of them had chosen University Hospital in Madison WI to perform a laparoscopic procedure about 18 months ago and was very happy with the outcome. Also at this same time our insurance got back to me and while they were open to a second opinion they highly recommended it and we had a service called, Cancer Resource Services that helped in directing you to one of 21 approved cancer centers they recognize which in my case happened to be the Paul Carbone Cancer Center at University Hospital in Madison WI. So I made a call to them to discuss getting a second opinion and to meet with an urologist and I really was interested in discussing the De Vinci procedure. In the days between meetings I had come to the conclusion that I was 90% sure surgery was for me based on the following.

1 My present age (48)
2 My present health condition (Excellent)
3 The fact I had two young kids (9 & 12)
4 The fact I should have 30 plus years life remaining
5 The fact if cancer had spread, I could still follow up with radiation where in reverse surgery was not as easily preformed after radiation.
6 The stage of my cancer hopefully still contained with-in the prostate
7 And plus it felt like the right thing for me, personal decision everyone makes.

Also there were three items that I rated in order of importance that I wanted to accomplish

1 To have the best chance of long term cure. (Without item 1 item 2 and 3 wouldn’t matter if I wasn’t here in 5 years or whatever.
2 Incontinence. Next in line of priority of life was this issue and now that surgery looked like the way I was leaning it appeared that there may be a slightly better chance of regaining this utilizing the robotic procedure. However I don’t believe there is any difference in the procedure it’s the surgeon who makes the biggest difference.
3 ED problems. This rated third in my list of priorities but again with surgery it appeared there was good nerve sparing capabilities utilizing the De Vinci. Again if you have a good surgeon I don’t know that there is a major difference.
And a bonus number 4, the De Vinci had the added benefit of being less evasive and able to get back to normal life and work sooner.

Jim - this is a great idea to have one thread. Jeff chose to have a radical prostatectomy. Our first thoughts were that he would go with radiation seed implants. then he met his urologist who is also a surgeon, who had PCa and surgery 4 years ago. that cinched it for Jeff. he wanted to get the prostate out and have the doctor look around while he was in there. I would have done more research, but Jeff made his decision fairly quickly and has not looked back since.

Hi Everyone

Here is an excerpt from my long thread entitled "Proton Radiation Therapy - My Journey With Prostate Cancer".

*****Why I Selected Proton Radiation Therapy

After extensive research and networking, I decided on Proton Therapy. My two choices were robotic surgery with one of the top surgeons and Proton Therapy with one of the top radiation oncologists. After much thought and considering my age (notwithstanding that I am still healthy and youthful in many respects), I decided against surgery because I didn't want to take the risk of almost certain impotence (possibly permanent at my age) and possibly total or some degree of incontinence. If I were substantially younger, I might well have elected robotic surgery.

I did not want to have to deal with what I thought could well be 100% immediate impotence and the potential difficultly of regaining some degree of potency. I was even more concerned about the possibility of some degree of incontinence. In my final years, I want a reasonable hope for a cure, but also a good quality of life. Having to wear pads and diapers potentially for the rest of my life was not for me. I have read some of the heart breaking stories in these message boards of men struggling with the nasty side effects of surgery. Some side effects improve or go away, but sometimes they don't.

Let's face it, choosing a treatment for prostate cancer is a gambling game--you have to weigh the odds. I also felt that Proton Therapy would be non-invasive compared to surgery, and is considered one of the safest forms of radiation, offering hope for minimal side effects. There is no question that radiation (including proton) can eventually lead to some degree of impotence down the road. However, in those cases, drugs such as viagra have been known to overcome the impotency in many cases which is not always true with surgery. Incontinence usually does not happen after proton therapy.

I met with a top medical oncologist and the conclusion was that the chances of a potential cure for me were about the same with surgery, radiation and brachytherapy (seed implants), but the potential negative side effects vary greatly among the various treatments. Quality of life is very important to me--I would rather live fewer years and live them well without having to deal with treatment side effects that make life miserable. I concluded that Proton Therapy offers as good a chance of success as surgery (the supposed gold standard) for me, with the potential for little or no negative side effects short and longer term.

The problem I have with brachytherapy is the potential for some nasty urinary problems (e.g., strictures of the urethra making it impossible or difficult to urinate without some medical procedures). Also, the seeds could let loose and migrate to other areas of the body, including the lungs. I talked with one patient recently who was treated with seed implants followed by x-ray radiation therapy in July 2006; recently, he had to have medical procedures performed because he couldn't urinate. This does not mean that all patient having seed implants will necessarily have this problem, but it is somewhat common with seed implants which has been confirmed to me by other reliable sources.

IMRT/IMGT photon (x-ray) therapy is the most sophisticated type of x-ray radiation today, but not considered as safe as proton radiation. Proton radiation enters the body at a low dose and the high dose is directed to the cancerous area and stops there; x-ray radiation enters and leaves the body at the full dose. It has more potential for damaging good tissue surrounding the prostate. I believe that IMRT/IMGT x-ray radiation has the potential for greater negative side effects than proton radiation.

It is true with radiation therapy (either proton or photon), that it usually takes up to two or more years for the PSA to get to its lowest level compared to surgery where the PSA usually goes to zero immediately. It is true with surgery that it makes future radiation treatments possible if the cancer recurs. It is not necessarily true that the prostate cannot be removed if the cancer recurs after radiation therapy if the cancer has not escaped the prostate capsule. Some surgeons just refuse to do the surgery, but surgeons at such top hospital as Sloan-Kettering in Manhattan have removed the prostate after radiation therapy if the cancer recurs, depending on the circumstances.

Dave