CSN Login
Members Online: 13

Looking for Answers in Virginia

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

These discussion boards are very informative! I found out the dreaded news over the cell phone during my son's soccer coach meeting. Because I didn't really grasp the reality of the situation, amazingly, I told the doc...he need to call me back because I was in the middle of a meeting! After the reality soaked in (10 minutes later...)...I can't really describe the sentiment. I was like an emotional time bomb especially the next day. I'm doing much better than two weeks ago. I'm 44, in relative good health, pretty active, etc. Go figure. It was a terrible thing to hear over the phone, but after further thought, I guess there's no other way to break the news. It wasn't necessarily insensitive...he was straight to the point relaying to me that my PSA is 2.2, the stage was T1C (which I guess doesn't mean too much considering the majority of people are diagnosed the same way...), and a Gleason score of 3,4=7. I would classify the call similar to a rollercoaster ride...the term early detection was used a couple times in the conversation along with an estimation of being most likely curable (positive), but he also used the term "aggressive" which scared the you know what out of me. Before I could get the one million questions started, he told to immediately go and purchase a book at your traditional type of book store...Barnes and Noble, Books-a-Million, etc., titled Guide to Surviving Prostate Cancer by Dr Patrick Walsh. I have to admit it's pretty good and answered many of my questions, however the book is dated 2007 and it's 2010 now. With three years omitted, I'm looking for the latest and greatest. I've got a frat brother who is a doctor...immediately told me that at my age for peace of mind...get the gland out of your body, however the dreaded side effects seem so confusing and I understand...everyone is different. Also had a friend that entertained Da Vinci about three years ago...he seems like a happy camper with incontinence completely gone and a little problems with the mojo which he glady told me they've got plenty of stuff out there to fix that...he's 55 having done this at 52. I'm 44 with much optimism leaning totally towards Da Vinci - Sentara Norfolk General has some outstanding oncologists over there...I hear some of the very best - Dr Fabrizio and Dr Lance...I hear they've got two more guys over there that are just as reputable. But...like I said...that was three years ago when he had the procedure done. This book leans more towards "open prostatectomy" and states that it is the gold standard because the surgeon has the element of "feel" on his side. Robotic radical prostatectomy was somewhat looked down upon...it also detailed radiation seeds and I'm now reading much on proton therapy. Both sound like great alternatives, but I don't see any 40+ year old going in these routes...as a matter of fact, it seems everyone under 50 gets the gland taken out. I think I understand the bias...as an educator I was told that no question is a dumb one...I guess the rationale is based upon the younger you are, the better able you are to bounce back physically from the trauma of surgery. I'm in Virginia Beach area...looking for some well informed input. Sorry for being so long winded...

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

That's the first thing. Most of the treatment options cause irreversible changes.

What is your PSA history?
2.2 is well within the normal range, so why did you get a biopsy?

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

Completely understand...this was my first test. I went in because I was experiencing some slight pressure urinating. It was the strangest thing...only to my knowledge occurring in that morning whiz! Upon thinking it was kind of strange, I went into my family physician for a check-up which resulted in me being sent to a urologist for further diagnosis. He noted that the prostate was slightly enlarged and prescribed antibiotics as a first show of defense for prostatitis. Went back in three weeks...apparently, the inflammation went away...free to PSA was 10.3. As a precaution, he elected that I get the biopsy. Still don't know how many biopsy needles were positive. I believe the driving factor was the low free to PSA. I'm going in tomorrow to see my urologist for the first time after the biopsy.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

It doesn't sound like it with a Gleason 7, but it fits the model of one PSA and a biopsy. Given your young age, it is more likely to be an aggressive cancer, but there is insufficient information at this point. The PSA number is low, and since you have only had one PSA test, there is no way to tell whether or not it is rising, and if so, how fast. The PSA doubling time is a more important indicator of aggressiveness than the PSA number itself, and you don't have that information yet.

So on that basis, I would say that you should consider getting another PSA in 2 or 3 months, and waiting until after that to make any treatment decisions. Then, even if the second PSA is up, you might want to get another one after that to confirm the trend. There are factors that can affect individual PSA tests, as my oncologist reminds me periodically, so it is unwise to make any important treatment decisions based on a single test. When I've been on chemo, it would only be discontinued after a rise in three consecutive tests, for example, and I have had it bounce along for months at a time with a test every three weeks and no clear trend in any direction.

The overdiagnosis problem is real, apparently, just to make things more confusing for men in your situation. See: http://dartmed.dartmouth.edu/winter09/html/disc_overdiagnosed.php

On the other hand, that is just one more reason not to rush into a treatment decision.

bdhilton
Posts: 759
Joined: Jan 2010

You only get to do this right once...so my advise is to select your poison based on experience and successful stats of the doc doing the treatment...If you need to travel, travel...I flew back to Atlanta from Chicago 2 1/2 days after surgery (I had the Open RRP not robotics)...

Best of luck and God bless you in this journey

hopeful and opt...
Posts: 1332
Joined: Apr 2009

Sorry that you have joined this club......generally during the first couple of months, most if not all of us go thru shock, depression and all the negative feelings associated with this.

It is a good idea to get a copy of your biopsy report, and all medical data so you can have it available to go to various doctors, support groups, etc.

YOu also want to have the parrifin blocks of your biopsy sent for a second opinion, determining the gleason score is a complicated process and you want to have an expert review this............Dr. Epstein, Johns Hopkins is a great choice.....simply contact your docs office and have then send the blocks.

My opinion is a little different than the above poster.......although psa's are basic indicators of trend, the biopsy is the more concrete information

There is a test called an endorectol MRI with a spectroscopy that will stage your disease, and indicate nodule involements if any, and where they are located.......the mri is covered by insurance however the spectroscopy is consided investigational and is not covered.

Anyway, get back to us, let us know how many cores were taken, how many positive, the amount of involvement and gleason score of each.

Also take a deep breath

We are all with you

Ira

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

I agree that the biopsy is certainly a more concrete indicator than the PSA of where it's at, especially since his PSA is only 2.2, but neither says where it's headed. That should be known before any decision is made.

hopeful and opt...
Posts: 1332
Joined: Apr 2009

I'm thinking that if the biopsy shows that the cancer is more advanced, the time that it takes to measure a trend based on the psa would be to a disadvantage. Medical treatment might be needed soomer than later.

By the way , there is a molecular test put out by Aureon that gives some indication of the aggressiveness of the cancer.

There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.

But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.

I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

Thanks for the feedback guys...I'm under the impression as in the result of a positive biopsy that the PSA test conducted has instrumental value, but not as concrete as the biopsy, i.e., "seeing is believing." With the evidence directly in front of me, I'm trying to rationalize with waiting to see of the PSA goes up, getting a second opinion, ...etc. I know its there, so my estimation is to resolve the issue by eliminating the problem. I'm struggling with did I detect it soon enough?...why didn't my physician start screening me at age 40?, what's the best alternative for mid-40 year olds? Its almost ridiculous...I can't say that I'm in the best shape of my life, but clearly I'm not far from it. I go to the Doc today at 4:00 pm...armed with (it seems...) limitless information. Any recommendation for posed questions?

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

How many cores were positive?
Out of how many cores?
Should we send them out for a second-opinion staging workup?
Have you seen the Dartmouth overdiagnosis study, and if so, what is your opinion of it?
Is this an aggressive cancer, or not, and what is that opinion based on?
Do I need to act fast, or is it safe to take some time to decide?
Should we do one or two more PSA tests to establish a trend and get a PSADT?
Do you think that "Active Surveillance" might be a sensible approach?
Would you recommend a molecular test?
What percentage of prostate cancer patients are my age or younger?
Do you know of any local prostate cancer support groups?
And the all-time winner:
If you were in my position, what would *you* do, and why?

If you aren't satisfied with an answer, then keep asking questions until you are.

I certainly understand the desire to "just get it out". It's the natural reaction to a cancer diagnosis, but it may or may not be the wisest course of action. And remember whenever you are talking with doctors that when all you have is a hammer, everything looks like a nail. So a surgeon will probably recommend surgery, a radiation oncologist will probably recommend radiation, etc...

Your doctor didn't start screening at 40 because the guidelines say start at 50, unless there is a family history, then 45. So you are very young to have this. That, by itself, points to two likely possibilities -- either it is an aggressive cancer, or it has been detected at a very early stage, or both.

Best wishes for an informative meeting and a good prognosis!

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

Good Morning Gentlemen! Just off my initial meeting with my doctor. 5 needles of 12 were positive. Looks like the majority of the PC is 3+3 (in two areas; 4 of the 5 needles) and one area was 3+4 (have to look at my notes...) All questions answered...my research proved to be very beneficial. He laid out all the stops...radiation, cryo, da vinci...I threw out there proton therapy. I didn't realize proton therapy was so expensive...I mean I knew it was somewhat expensive...but apparently it's significantly higher. All good treatment therapy, but considering the fact that its most likely localized, the fact of non-palpability and being good candidate for nerve sparing (...especially with the 3+4 in there), I believe its best to remove the gland for a better survivability rate for the future. The biopsy has been reviewed twice by two different pathologists...I don't think by way of the diagnosis that a second opinion is viable...the PC is definitely there. I don't know of the percentages of men my age who have PC in general...in this area, my doc noted on one hand the people that he's treated bringing to my attention that the percentage is significantly lower than the norm which means that the risk is higher regarding my vulnerability of a more aggressive type of PC (my interpretation). I think it's best that I move forward for the preservation of life...and that is to remove...most likely via Da Vinci.

Feb2010
Posts: 51
Joined: Mar 2010

Are the doctors that you have mentioned at Sentara really good?
I have decided on surgery, open or Da Vinci. Just looking for
who's got the most experience in their field. Good luck.

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

These guys are really good...downside...you can't get in there to get the ball rolling. Interesting today I received the call to get my initial consultation for the surgeon of my choice...they told me I could get in there on the 26th...I was like "that's quick..." That's when the receptionist stated...26th of April. That's nearly a month from now; not to mention the potential two month wait to get the surgery done. I definitely didn't like that at all..

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

You have probably all ready heard it mentioned but if you go with DaVinci look for a surgeon with ton's of experience. Not 100's....Look for someone in the 1000 + range.

It has a high learning curve and the ones with the most skill will do the best when it comes to nerve sparing. Very delicate portion of the surgery.

Larry Age 55 (7 months post davinci)

hopeful and opt...
Posts: 1332
Joined: Apr 2009

percent involvement? you gave the gleason, but not the involvement.

As far as surgery, you get only one operation...ONE....one chance to do it right...no do overs....so even if you need to travel to timbucktoo...get the best.........John Hopkins might be a good choice for you......YOU WANT A SUPERSTAR

Ira

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

I need to further expand on that question with my doctor...that's the one question I did not ask. As far as travelling to timbucktoo, how would arrangements like that work? John Hopkins was in fact my first choice of preference, but the logistics of it all...I'm open to flying up there, (it's no more than a skip and a jump from Norfolk) but I would think that there would be some challenges with flying back or for that matter, would I be allowed to fly back. Where would I stay...as I said, that is what I really wanted to do in the first place...any thoughts?

hopeful and opt...
Posts: 1332
Joined: Apr 2009

You need to have a copy of all your medical records, so you can go from doc to doc....get a copy of the biopsy report, psa report and any other information from your doc...simply call the office.....

Make the appt with johns hopkins.....there are hospital social workers that will help with arrangements, apartments , hotels, support personnel or whatever is needed....
the surgeon will know , or will direct you. ....arrangements at the hospital are only details.

Ira

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

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?

hopeful and opt...
Posts: 1332
Joined: Apr 2009

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.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I had a very aggressive cancer with psa of 24 and gleason 9 at age 52. It had already spread and I was given one shot of lupron to shrink the tumor and then radiation treatments. You do not need hormones but you might want to think about avoiding surgery and just take radiation. It killed ALL the cancer in my totally cancerous prostate. I have no side effects from the radiation and am still working and playing 7 years later after being given 2 years to live if lucky. Mostly, just do not stress about this. You will be fine and once you make the decision to do something just be sure you were the only one who made it.

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

You didn't mention that one. Just wondering if you discussed that, or if it's not a viable option in your case. It might preserve your fertility, which any of the removal options will not.

07SHNNAC7081522's picture
07SHNNAC7081522
Posts: 17
Joined: Mar 2010

Erisian - the seeds were an option of consideration. I'm just more in concert with total removal at this point...

Feb2010
Posts: 51
Joined: Mar 2010

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

Trew
Posts: 892
Joined: Jan 2010

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 opt...
Posts: 1332
Joined: Apr 2009

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
Posts: 892
Joined: Jan 2010

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's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

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

Trew
Posts: 892
Joined: Jan 2010

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.

hopeful and opt...
Posts: 1332
Joined: Apr 2009

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

RichardRS's picture
RichardRS
Posts: 44
Joined: Nov 2007

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.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network