Just Diagnosed, what do I do?

You can get,  I believe they still send them out, a DVD video all about brachy and IMRT radiations from:   www.dattoli.com   and probably info from   www.rcog.com   also www.astro.org     (Association of Radiology Oncologists- they have conferences, data and also can mail you information about all types of radiation) and JNF has another radiation info site. Speaking for myself whom had stats that were much worse than your appears, denied surgery by Dr. Menon (which was a righteous assessment by him, prior surgeon said curative: yeah go figure!). I interviewed 3 different radiologists, fired one just one day prior to starting the proceedure (found she basically lied to me on two things).  I actually had 8 face to face opinions and even more via emails or phone calls above that number. I knew this was a monster..and level Defcon 5 was reached (LOL).

Found the heaviest duty radiation protocol that could be found in the USA(cause it was my primary treatment), and with an excellent rad-doc and went that way. It went very well and felt nothing, near the ending sessions felt some fatigue which was disclosed in the beginning it goes away also. Had some unique bowel movements and urgency for awhile and sometimes have to deal with urgency and not put it off (-:} The radiation of today is much different than in the past, they give these short time exposures in daily sessions, and weekends off for alittle recovery concept. Thus the damage to good tissue is minimal to non-issues and usually patients do not have major issues, they can control depth and delivery with very good precision...which years ago they could not and some people had on going issues. Continent and urination is not a problem and since I started from an emergency room with total blockage, here now 9 yrs. later...very pleased with my plumbing and continency. Basically a happy camper, getting through the selection processes of b.s., agendas, bias...was very disturbing, having to fire docs is weird.

Also, with my combined HT therapies I would say went well thus far...and exceeded my expectations....my nomograms were just plain scary to look at with my total numbers.
I am still doing well thus far, but with PCa subject to change any time without alot of notice for higher risk folks. Like any treatment the skills and experience of the doctor are more important than the technology, to some degree...don't use EBRT or any other of the older radiation machines, they are literally ancient in comparison. Study and question and run your own nomograms. Google search Bolla abstract studies....interest reading....I basically followed that concept...perhaps that is why I made it to year 9 thus far. Brachy seeds with IMRT is a very good protocol, done by an expert is paramount.

You have some tough decisions to ponder, best to you. You get to choose various paths in PCa. I am not recommending anything for you personally except look over everything, you could start an HT therapy while waiting to decide, some have done just that.

p_elliott said...
Devasted1 said...
I have a question that maybe one or more of you can answer. My urologists oncologist is experienced with both the open retropubic cut and davinci robotic technique and had great experience doing both. He is willing to do the operation with either approach but based on his experience he is recommending the retropubic open cut because as he says he can do a better wide cut than if he used the Davinci approach.

Does his suggestion and approach make sense to anyone?

i am trying to figure out how to do my signature like many of you have and need some guidance as to how to set it up.

Thank you in advance for your insight, comments and suggestions. It is very informative and helpful.


That makes absolutely no sense find another doctor!!!! There is no reason to have any surgery other than Da Vinci robotic unless you were full of cancer. At which point I'm not sure surgery would be an option.

Devastated what your doctor says makes perfect sense. If it were me deciding I'd choose what the doctor preferred doing in my case. The general consensus that while robotic is less invasive the results for it are about the same as open. I remember an early study suggesting that robotic patients tend to have longer lasting incontinence but that's not proven. We have posters who have had good results with both types of radical surgeries

Post Edited By Moderator (James C.) : 3/1/2011 2:06:27 PM (GMT-7)

Devastated:


from personal experience I can tell you that with robotic I was home in 24 hours, catheter out in a week, no urinary issues, no significant ED after 3 weeks, back to work in 2-3 weeks ( I can also work from home ), running and having sex within 4 weeks, great state of mind after that. Many many more people who opt for surgery are moving towards robotic and I think for good reason.


Whatever choice you make will work. Robotic is clearly a very popular choice and for good reason.

Radiation can also work. But if you're like so many of us, you might just want the cancer out of your body as to many of us this bust makes more sense for long term goals and for how we look at things.

If I were you I would visit a specialist in robotics in your area and ask him/her why he/she thinks robotics is better. Then you can compare and make a perfect decision.

Post Edited By Moderator (James C.) : 3/1/2011 2:06:45 PM (GMT-7)

Ziggy, I agree with you fully on this one.

Devastated1,

It is so hard to absorb all of the information and come to a decision regarding treatment. I remember my husband's relief when he finally decided, and he has not looked back.

Personally, I think Fairwind gave you excellent advice. And, since you asked for personal experiences with radiation treatments, I can tell you quickly about my husband's. He was a Gleason 7, and elected to undergo IMRT (45 sessions, 81 greys). The margins were radiated as well as the prostate. This was done at a cancer clinic near his workplace, and he was able to miss only about a half hour to 40 minutes of work each morning. Keeping his job (and an impending promotion) was critical to him, and this was the best way for him to achieve results equal to surgery without any of the side effects of surgery.

He had no side effects; no bladder frequency or urgency, no bowel changes, no ED and no fatigue. His first PSA test will be in April, and we are hoping for good results. Of course, anything can happen at this point but so far so good, and he is very optimistic. He may be luckier than the norm, I don't know. I would never make the claim that your experience would be the same, and no one who has had a better-than-average recovery from surgery should, either.

No clue if radiation is right for you, but I wanted to say that all of us want the best treatment. The men who choose radiation also of course 'want the cancer out of their bodies' and find radiation to 'make more sense for long term goals'. It sounds as if you have choices, and you are not less responsible if you choose one type of surgery over the other, or even if you choose a form of radiation. We know several men personally who have done well with each of those treatments.

Wishing you the best!

Juliet

Hi Devasted1,
Proton beam is not new technology. Loma Linda has been doing PBT for about 20 years. The costs are very high for this therapy and there is no data to suggest it works better than IMRT, Brachytherapy, or IGRT. Each of the last forms of radiation therapies are newer technologies that have clearly reduced side effects such as those that were around when PBT got it's start. Most men who have had PBT are quite happy with it, but the same is true with guys who have had the later versions of photon based therapy and seeds.

i think I need to "straiten" up what our newest robotic surgery is stating. I appreciate his enthusiasm with his success, but to date robotic surgery is about the same as open surgery and it is not the method but the surgeon skill that will have more to do with surgical outcomes. There is information that the newer the robotic equipment the better, but you are still dependent on the performance of the surgeon. I personally chose the robotic method but it was based on the reputation of the surgeon who does direct analysis of new equipment by Intuitive Surgical ~ the make of the DaVinci robotic equipment. But that stated, there are many surgeons that should not be doing them regardless of method. Skill and experience typically go hand in hand and I have seen many open procedure surgeons with a fantastic track record.

On your last question:
"Do they do the 3D for the wide beam to only radiate only the prostate or did they kill good cells at the same time of destroying the PCa cells?"

All forms of radiation will destroy good and bad cells they come in contact with. In the early 90's a wide beam was used and it really was not with great results. But as time has moved on the technology has greatly improved. In fact a key is how fine they have improved that has made radiation a good option. Brachytherapy has newer seeds and techniques, external beams are now "intensity modulated" and accuracy is excellent. Accurate enough to hit area lymph nodes with minimal collateral damage to good tissue.

Tony

Davidg said:
"I do believe that it is true that robotic procedures had grown exponentially in recent years and surpassed open surgeries. Is that not correct? Perhaps that was a growth percentage chart I saw and not a total numbers chart."

Absolutely true that robotic has grown exponentially and exceeded open procedures in quantity. But quantity does not necessarily mean quality either. . But not always for the good, David. I just had a robotic surgeon as a guest speaker ~ Dr. Tim Wilson. Truly in the top of the group with over 2,000 robotic surgeries at a center that is known for them at the City of Hope. He pointed out some things I didn't know. For example the Davinci robot has been around 11 years after FDA approval. Like a car newer features are added with each new release. Currently we are on release 4. The newest features on this model are super high definition cameras and displays and tighter arm control. Magnification has quadrupled and the arms auto adjust their movement depending on the magnification. There are centers that are still using Version 1 with CRT screens. Additionally when newer models are purchased by centers, they sell theeir older models, albeit retrofitted through the factory, usually to smaller centers. Until he said that I would never have thought that asking what version of Davinci are you going to use? Oh, And how long have you been using it?

Just some thoughts to think about

Tony

Post Edited (TC-LasVegas) : 3/1/2011 4:18:10 PM (GMT-7)

Tony:

I didn't know that. That's pretty scary actually.

It's like the people who go down to Colombia or Mexico to have eye surgery only to learn the centers down there are using old used American machines that have been replaced by newer models.

I bet a lot of these old models find their way to developing countries too.

Another concern about the Da Vinci robot is the sheer cost of the machine and the investment hospitals make in them. I think partially that answers the question as to why there is so much competition and recruitment involved in this entire process.

What you say is also why, in my mind at least, you would want to go to a high volume guy. Besides the experience/skill he/she will probably also have the latest equipment.

I think I read somewhere that after each robotic surgery they have to discard $4000 worth of equipment.

Thank-you Tony, Davidg and Purgatory for your insight and comments. Very instructive and pertinent to my upcoming decision.

Devasted1 Welcome!
I am new here,only around 3 weeks. I too had a high PSA 38.with a Gleason of 7 (4+3=7) I chose to have the RRP which was done on 01/25/2011. pathology report showed cancer outside gland and Gleason of 8. Things are going good right now and waiting for my next Dr visit on March 24. My surgeon has told me that there is possibly going to be some radiation in my future,so we will just have to wait and see.
I wish I would have found this site before my surgery. These are good guys here. They have been a good source of info and a good chuckle now and then.
Like others have said" take a deep breath and figure out what is best for you"
It is just so silly that a gland that small can cause so much havoc in a man's life!

Hey Devestated,

Do the best you can to relax.  You appear to be doing all of the right things.

I had my surgery on a Monday and got my pathology report on the Saturday after surgery.  I think that is fairly typical.

Mack