Looking for Answers in Virginia

hopeful and optimistic

07SHNNAC7081522 said:

Hello Hopeful
Called up to Johns Hopkins today...consultation could not take place with Dr Allaf until the end of April...still looking at two months minimum before I could get the work done...is that pretty typical these days? My buddy who had this procedure done three years ago...within two weeks of the diagnosis, he was in the batter's box. Have things changed that much?

Do research on Dr. Allaf,
Johns Hopkins is not the only premere hospital.......there are top surgeons( I think Menon) at the ford clinic in detroit, in NYC there is Dr Samadi and Dr Tewari( both did 1000's, etc, etc.

If you think Allaf is good, then have your doc intercede and try to move up the appt. The docs at johns hopkins have all levels of experience, so research them.

Get the involvement of your cores.......you may have to look into a treatment option other than surgery.

Get a second opinion on your biopsy by dr epstein john hopkins.

Feb2010

New Proton Therapy Institute
FYI only. A new proton therapy is opening in Hampton Roads.
http://www.hamptonproton.org/
Phone nr. 757-889-5238 to schedule consultation.

Trew

You are such an ideal
You are such an ideal candiate for proton therapy. I hope you give this option a good hard look and escape so many of the side effects of surgery.

If sounds like you have a lot of time to make a decison. I consider you so very lucky on this. I wish my PC had been found at your stage. It would have been proton therapy for sure, no looking back!

hopeful and optimistic

Trew said:

You are such an ideal
You are such an ideal candiate for proton therapy. I hope you give this option a good hard look and escape so many of the side effects of surgery.

If sounds like you have a lot of time to make a decison. I consider you so very lucky on this. I wish my PC had been found at your stage. It would have been proton therapy for sure, no looking back!

Trew
I know that you mean well, but it seems to me that when someone posts that they have prostate cancer, you generally tell them that proton therapy is the cure all, and perfect for them,....in my opinion these posts are biased .......studies have shown that proton is not better than other radiations, and is more costly....the results are equal.

You mention escaping the side effects of surgery.......the way you say this, one would think that proton therapy has no side effects, when in fact it does.

Actually in the literature that I read, active surveillance quite often is the preferred treatment for older men with low volume, non aggressive cancer(this is true for men who can live with cancer in their body, and go on with their life)); more so than proton, surgery, etc

Proton therapy is appropriate in some situations as are other treatments.........however not in all.

Ira

Trew

hopeful and optimistic said:

Trew
I know that you mean well, but it seems to me that when someone posts that they have prostate cancer, you generally tell them that proton therapy is the cure all, and perfect for them,....in my opinion these posts are biased .......studies have shown that proton is not better than other radiations, and is more costly....the results are equal.

You mention escaping the side effects of surgery.......the way you say this, one would think that proton therapy has no side effects, when in fact it does.

Actually in the literature that I read, active surveillance quite often is the preferred treatment for older men with low volume, non aggressive cancer(this is true for men who can live with cancer in their body, and go on with their life)); more so than proton, surgery, etc

Proton therapy is appropriate in some situations as are other treatments.........however not in all.

Ira

In defense of proton treatment
No offense take, but generally most posters on this forum seem to favor DeVinci surgery. I am trying to insert a little balance into this discussion. There are options to surgery.

The number of proton centers is growing all the time. Men are still fathering children after proton treatment- they aren't after surgery. Not a big deal for many of us who are older and don't mind shooting blanks, but the younger men might want to consider preserving that part of their life.

There are many positive testimonials from proton patients who are very happy having been treated and still having sex and continency. I am one year out from surgery and still struggling in that area- it is devastating to me. The surgery may preserve all important nerves, but sometimes it doesn't. So we have a lot of discussion on these borads about ED or lopsided erections because nerves on one side are gone. How many men who have had proton therapy are involved in those kinds of discussions?

IF my cancer had been caught early enough I would have jumped on the option of proton therapy. Is it the cure all? I have no idea. I just know that men who have had surgery also have their cancer return- surgery is not a cure all, either.

That is my take on this. How many posters favor surgery on this forum? Seems like most. Some one starts posting new here they might get the idea that surgery is about the best option going. I will differ with that opinion and just want to insert a little balance back into the program.

And yes, I do believe with all my heart and thoughts that proton therapy is the better opton for most men with gleasons 7 or under. Absolutely.

RRMCJIM

Trew said:

In defense of proton treatment
No offense take, but generally most posters on this forum seem to favor DeVinci surgery. I am trying to insert a little balance into this discussion. There are options to surgery.

The number of proton centers is growing all the time. Men are still fathering children after proton treatment- they aren't after surgery. Not a big deal for many of us who are older and don't mind shooting blanks, but the younger men might want to consider preserving that part of their life.

There are many positive testimonials from proton patients who are very happy having been treated and still having sex and continency. I am one year out from surgery and still struggling in that area- it is devastating to me. The surgery may preserve all important nerves, but sometimes it doesn't. So we have a lot of discussion on these borads about ED or lopsided erections because nerves on one side are gone. How many men who have had proton therapy are involved in those kinds of discussions?

IF my cancer had been caught early enough I would have jumped on the option of proton therapy. Is it the cure all? I have no idea. I just know that men who have had surgery also have their cancer return- surgery is not a cure all, either.

That is my take on this. How many posters favor surgery on this forum? Seems like most. Some one starts posting new here they might get the idea that surgery is about the best option going. I will differ with that opinion and just want to insert a little balance back into the program.

And yes, I do believe with all my heart and thoughts that proton therapy is the better opton for most men with gleasons 7 or under. Absolutely.

We should embrace all talk
We should embrace all talk on the site...there is NO perfect treatment for everyone. I am now 55, one year post surgery.. Do I regret my decision...sometimes...the incontinence is minimal but ever present.... ED was never a problem at first, now I suffer the "Bent Penis" I assume from scar tissue... since both nerve bundles were spared... but I am alive...my PSA is still less than 0.01, I get to watch the grandkids grow up...I still go to Hawaii several times per year to dive, etc...I get to spend all my remaining days with my wife... I look back on what was...regrets, sure....do it again...absolutely

hopeful and optimistic

Trew said:

In defense of proton treatment
No offense take, but generally most posters on this forum seem to favor DeVinci surgery. I am trying to insert a little balance into this discussion. There are options to surgery.

The number of proton centers is growing all the time. Men are still fathering children after proton treatment- they aren't after surgery. Not a big deal for many of us who are older and don't mind shooting blanks, but the younger men might want to consider preserving that part of their life.

There are many positive testimonials from proton patients who are very happy having been treated and still having sex and continency. I am one year out from surgery and still struggling in that area- it is devastating to me. The surgery may preserve all important nerves, but sometimes it doesn't. So we have a lot of discussion on these borads about ED or lopsided erections because nerves on one side are gone. How many men who have had proton therapy are involved in those kinds of discussions?

IF my cancer had been caught early enough I would have jumped on the option of proton therapy. Is it the cure all? I have no idea. I just know that men who have had surgery also have their cancer return- surgery is not a cure all, either.

That is my take on this. How many posters favor surgery on this forum? Seems like most. Some one starts posting new here they might get the idea that surgery is about the best option going. I will differ with that opinion and just want to insert a little balance back into the program.

And yes, I do believe with all my heart and thoughts that proton therapy is the better opton for most men with gleasons 7 or under. Absolutely.

Trew
I agree with you that most of the posters on this board are pro surgery as a treatment option, and it's difficult for many of them to understand the benefits of other treatment options.....a lot of these men simply want to get the cancer out of thier body as quickly as they can, and in my opinion are overtreating.

I not an expert on this, but it seems that with different stages of aggressiveness and volume of cancer, there are some option that are better than others......and are interchangeable.

I want you to know that I think that proton can be a good choice in some situations, just like anyother treatment option.

The way I look at this is that we want to have facts to determine the best treatment option......sometimes surgery is better and other times radiation.......but, I also believe that we are not routing for teams....ie...Go Surgery.......Go Radiation......Go HIFU...Go Active Surveillance.......that is we want to give facts so a logical decision can be made, and the man figuring out what to do will have less regrets.

Anyway that is where I am coming from

Ira

Trew

RRMCJIM said:

We should embrace all talk
We should embrace all talk on the site...there is NO perfect treatment for everyone. I am now 55, one year post surgery.. Do I regret my decision...sometimes...the incontinence is minimal but ever present.... ED was never a problem at first, now I suffer the "Bent Penis" I assume from scar tissue... since both nerve bundles were spared... but I am alive...my PSA is still less than 0.01, I get to watch the grandkids grow up...I still go to Hawaii several times per year to dive, etc...I get to spend all my remaining days with my wife... I look back on what was...regrets, sure....do it again...absolutely

The problems you are having,
The problems you are having, that I am having, are less common with proton therapy. But while I am on hormone therapy- hated stuff- I really don't know about the ED effect of surgery. With hormone therapy ED is your life along with a host of other side effects. I just know a few men who have had proton therapy and have listened to testimonials and my impression is that the men who have taken proton therapy don't have to discuss incontinence and ED like we surgery men do.

If I could go back and do this whole thing over again I would do everything I could to escape surgery (this is my experience) and just take the radiaiton and hormone stuff. I cannot even begin to describe how this incontinency thing is messing with my life and my passion to backpack.

Like some have said, quality is important.

Well, once PC strikes we all have decsisons to make. It is not easy on any of us. Well, maybe a few around here are back to normal in 6- 8 weeks. I do envy them.

RichardRS

Robotic Prostate Surgeon Washington DC
There is an excellent robotic surgeon at Washington Hospital Center in Washington DC.
Dr. Jonathan Hwang. He did mine in 2007. No pain, no margins, recovered erectile function in 9 months.