Just Diagnosed.....

You are a patient at a first class organization. Dr. Carter is well known. 

This is the first that I have heard that Johns Hopkins is doing a targeted biopsy.....up to now they have been doing yearly random biopsies for patients who follow an active surveillance program.

I wonder if you first had a multiparametric MRI T3, then a three dimensional biopsy...was that an Artimis biopsy machine?

Active surveillance protocol is not generally age related....there is a man where I am treated who was accepted in an Active Surveillance program at age 35 

I have been in an active surveillance program, this is the start of my seventh year.....my initial results were the same as yours.........I hope to die with, not because of P Ca. ...At any rate as a young man of 50, why choose an Active Treatment thay may have major side effects, when you can maintain a quality of life, for a life time, or at least for a while,and still receive the treatment that you would have at diagnosis if cancer progression is found.

If you click my name to the left, I listed the treatments that I have received and information about management and expert source for Active Surveillance.

I know that your name is not Uh_Oh, but it is time for you to celebrate. ...A toast to you(not Uh_Oh  and good times.

I suggest that you change your name from Uh_Oh to Yes Yes

Best,

H

Uh-Oh

In my opinion your diagnosis couldn’t be better. The team analysing your case is at the top and they used the very best means to find the status of your case. Now you got the “ball in your hands” and have to kick it or keep it. It is not easy to decide on how to proceed but you have all the time to think deeply before throwing the ball in play. Quality of living is as important as peace of mind.

I totally agree with the “tips” from the above survivors. These guys are precious. Old timer is our senior and his posts are wise and always very smart. I see his “quarters” at the top too far a climbing but the scenery and views from up there must be wonderful. I hope we all manage to reach there.

Thinking in living with the cancer is confusing particularly when we are at the 50^th. It is a matter of being sick but feeling healthy. However that is the model we humans are made off. Jerry may explain this in better words. I was diagnosed at 50 too. The positive diagnosis strike me like a lightning bolt. Soon I realized that it was the start of a life style with healthy responsibilities. I would need to incorporate in my daily living a healthy behaviour tended with careful diets, fitness programs and life style.
This is the world of prevention and we should give more credit to those results of tests checking the lipids and markers of health. PCa concerns the immune system, bone health, liver and kidney functions and heart conditions. Cholesterol and testosterone levels are as much important as it is the PSA. And all these data should be filed and kept for future considerations.

Welcome “aboard”. Best wishes in your journey.

VG

Uh_Oh said:

Well, no AS for me!!!

I appreciate the advice from everyone. 

I met with Dr. Carter yesterday, and somewhat to my surprise, he did not believe AS was the best option for me and recommends surgery and removal. I was all set to hear that, due to my relatively los Gleasons (6) as well as low involvement of 2 cores, less than 5%), I'd be a "shoe in." His concern is that, even with my GS6, the cancer was found on 2 different areas of my prostate (left and right apex). Plus my prostate was a little larger than it should be for my age.

And here I was, gearing up for the argument I knew was coming with my wife over doing AS! She was relieved that he recommended surgery. She said "it was going to take a whole lot of convincing to get me to agree to leave that thing in you." LOL!

He didn't like the radiation option because of my age. He thought that at 51 there was too much time left in my life to risk potential side effects, including even development of other cancers, due to the radiation exposure.

He again assured me that my situation isn't "life threatening" but that I should get treatment within 6 months. Great... Well, that gives me some time to get in a little better shape, so it gave me the motivation I needed to join the local gym today. Time to start working on the wife for guilt sex now!

Ron

What is Dr. Carter's basis for suggesting that there is a risk of developing "other cancers" as a result of radiation treatment?  Whatever those risks are, I think they are minimal and certainly less than the risks associated with surgery.  Did he tell you that as a man w/PCa that you already have a risk of facing other cancers, whether you choose radiation treatment or not.   Did he tell you that you might need to get salvage radiation treatment anyway if the surgery fails, as it does for many men?

Did he go over ALL of the risks of surgery with you?  ED and incontinence are the major ones (both of which can last at least a year and in the worst casesbecome PERMANENT following PCa surgery) BUT did he also tell you about the visual shortening of the penis after the prostate is cut out (because of the gap that is created between top of the penis and bottom of the bladder when the prostate is removed), the risk of infection from the surgery (which is not a risk of radiation) and the risk of damage to associated organs (most likely the bladder and rectum) during surgery???  I bet not.

FWIW, I always get on my soap box when I hear that a urologist thinks that a man in his 50's should have surgery because he's "young" and supposedly better equipped (age wise) to endure and overcome the substantial trauma and risks of surgery.  I think that point of view is pure ****.  If surgery is inadvisable for someone older, there's no reason why it should not be inadvisable for someone younger either.

My recommendation is that, BEFORE you commit to surgery, you consult with some radiation oncologists -- specifically ones who specialize in IMRT, "high (as opposed to low) dose rate" aka HDR brachytherapy and CyberKnife (SBRT).  That's  at least 2-3 possible consultations to determine if you might be a better candidate for one of these therapies.  You can discuss the risks (if any) of developing further cancers (or any other side effects) from those treatments with them.

Personally, I was 59 when I chose CyberKnife, which I learned provides the MOST precise method of radiation delivery to the prostate currently available, which in turn minimizes the risks of any side effects.  I and other men on this forum w/the same diagnosis as you (Gleason 6, PSA less an 10) have been successfully treated with CK (which only requires 3-4 treatments BTW) without any side effects whatsoever -- no ED and no incontinence -- and without any disruption in our lives that other treatments -- especially surgery -- can cause.  CK was modeled on HDR Brachytherapy and IMRT is generally offered where CK is not available and as salvage treatment when surgery fails!!!

So, take the time to do this additional reserach before you commit to a treatment that can radically affect your life and will seem medieval by comparison to the modern radiation treatments available.

Good luck!!!

Uh_Oh said:

Well, no AS for me!!!

I appreciate the advice from everyone. 

I met with Dr. Carter yesterday, and somewhat to my surprise, he did not believe AS was the best option for me and recommends surgery and removal. I was all set to hear that, due to my relatively los Gleasons (6) as well as low involvement of 2 cores, less than 5%), I'd be a "shoe in." His concern is that, even with my GS6, the cancer was found on 2 different areas of my prostate (left and right apex). Plus my prostate was a little larger than it should be for my age.

And here I was, gearing up for the argument I knew was coming with my wife over doing AS! She was relieved that he recommended surgery. She said "it was going to take a whole lot of convincing to get me to agree to leave that thing in you." LOL!

He didn't like the radiation option because of my age. He thought that at 51 there was too much time left in my life to risk potential side effects, including even development of other cancers, due to the radiation exposure.

He again assured me that my situation isn't "life threatening" but that I should get treatment within 6 months. Great... Well, that gives me some time to get in a little better shape, so it gave me the motivation I needed to join the local gym today. Time to start working on the wife for guilt sex now!

Ron

Uh-Oh,

I think I read somewhere in this thread that your Dr. Carter is a renowned authority on AS. If so, his recommending against it (for surgery) must be based on something, even if it is just his "gut", which can never be ruled out.

My situation recently was similiar, mild disease by all criteria, a little older, at 58.  After speaking with five doctors, I chose surgery, but had over an hour discussion with a radiation oncologist whom I already knew and admire. His proposal was IGRT.  According to him, treatment with IGRT to 76 Gray would not increase my liklihood of getting a radiation-induced subsequent cancer in my lifetime. Point blank. I believe him.  I had asked this question because of my earlier experience with lymphoma, which combined with some forms of radiation renders lymphoma patients more prone to leukemia.

At a minimum I would recomment that you meet with a top-flight radiation oncologist and see what he thinks.

My surgery was by all indications curative and successful, but as several guys have said, RP is not easy, and the side-effects are significant.  After much study, I believe that in most cases, current-technology radiation probably has fewer short and long term side-effects than surgical removal, but RT is not risk-free or without its own potentially serious and dibilitating side-effects.

Many guys, like me, relate that the more they read, the more uncertain of what is best becomes. It is just a tough call to make in most cases. But I would at a bare minimum see a radiation guy... Get the guilt sex now; you quite likely won't be getting much for some time thereafter.

max

VascodaGama said:

Well set Max

Ron

I agree with all the above opinions. I wonder what made Carter to recommend surgery. Reaching to such decision done solo in regards to Ron’s age is Bull ****.
What has he seen or influenced or made him to judge Ron’s case and conclude his status in need of an earlier (within 6 months) treatment is ambiguous. I would get details from Carter’s judgement before drawing conclusions.
Cancer at the apex is probably the easiest in targeted treatments. It is far from the bladder and sphincter (in the open) but closer to the rectum. In any case nowadays when dissecting the gland or frying it with rays the whole prostate is treated, not just a portion of it.
Was this “location” the influence factor in Carter’s judgement?

It doesn’t surprise me that Ron’s wife is worry and applauds a solution with a quick fix. Many guys (if not all of us) freak out once declared positive with cancer. It is obvious that we would rather be free of it but at what “price”?

Max confronted this same experience not long ago. He sets well his opinion on Ron’s case. Enjoy the guilt sex now but do not use it as a time boundary to trigger a therapy.

Whatever Ron decides (keeping the ball or throwing it into play) it will be the best choice for him and we all will participate and help. He will make an intelligent decision.

VG

I say "GET RID OF THE QUEEN BEE SO THE WORKERS DO NOT ESCAPE"

The most important consideration is the experience level of the surgeon.

My freind Tim had Robotic RP by Dr. Eun of Temple in Philly who is known for doing great bladder necks

and did not leak from the time the cath was removed. That was three years ago.

I wish you well.

Jeff

Ron,

No one here including your doctor can substitute you in the decision process. In any case your choice is for sure the best and you should trust it.

Trying to get cured is logical and a life free of cancer is beautiful but quality living is important in particular to those young patients with many years of life expectancy. Age should not be the triggering reason for a treatment in prostate cancer unless there are high healthy risks behind obliging the patient to act the soonest. Nowadays postponing such treatment in PCa cases is regarded possible without losing the possibility of cure in a later procedure. Would you be 62 with similar diagnosis and the choices and possibilities of cure would be the same.

When such timing to treat “arises” then one should look for the most successful outcome with the lesser risks and lesser side effects. Some guys would prefer to confront a sort of occurrences more that others, he would accept them better. It all resumes in what one puts preferences on. The risks involving the treatments are well documented so that you could try getting informed (second opinions from experts), prepare a list of the items and discuss the pros and cons one by one with your family for a final decision.
That would be an intelligent way of finding peace of mind.

Here I post links that I think will help you in understanding the problem better. Please read them all;

http://www.cancer.net/coping-and-emotions/managing-emotions/self-image-and-cancer

http://www.cancer.net/coping-and-emotions/sexual-and-reproductive-health/fertility-concerns-and-preservation-men

http://www.cancer.net/coping-and-emotions/sexual-and-reproductive-health/sexuality-and-cancer-treatment-men

http://www.pcf.org/site/c.leJRIROrEpH/b.5822789/k.9652/Side_Effects.htm

http://www.cancerresearchuk.org/about-cancer/type/prostate-cancer/treatment/radiotherapy/side-effects-of-prostate-cancer-radiotherapy

http://www.cancerresearchuk.org/about-cancer/type/prostate-cancer/treatment/hormone/side-effects-of-hormone-therapy-for-prostate-cancer

http://www.cancer.net/navigating-cancer-care/young-adults/family-friends-and-relationships/talking-your-spouse-or-partner

Best wishes for the very best conclusion.

VG

Uh_Oh said:

Well, no AS for me!!!

I appreciate the advice from everyone. 

I met with Dr. Carter yesterday, and somewhat to my surprise, he did not believe AS was the best option for me and recommends surgery and removal. I was all set to hear that, due to my relatively los Gleasons (6) as well as low involvement of 2 cores, less than 5%), I'd be a "shoe in." His concern is that, even with my GS6, the cancer was found on 2 different areas of my prostate (left and right apex). Plus my prostate was a little larger than it should be for my age.

And here I was, gearing up for the argument I knew was coming with my wife over doing AS! She was relieved that he recommended surgery. She said "it was going to take a whole lot of convincing to get me to agree to leave that thing in you." LOL!

He didn't like the radiation option because of my age. He thought that at 51 there was too much time left in my life to risk potential side effects, including even development of other cancers, due to the radiation exposure.

He again assured me that my situation isn't "life threatening" but that I should get treatment within 6 months. Great... Well, that gives me some time to get in a little better shape, so it gave me the motivation I needed to join the local gym today. Time to start working on the wife for guilt sex now!

Ron

I was also surprised to read that AS was not recommended by Dr. Carter. However, there is a 'simple' explanation for this. The AS protocol at Johns Hopkins states that (relatively) young, (very) low-risk patients such as you will only be accepted if they have unilateral disease. Unfortunately, both sides of your prostate are involved.

http://urology.jhu.edu/prostate/active_surveillance_selection.php

One can question the reasoning behind the inclusion criteria that the Johns Hopkins AS program has implemented. In fact, these criteria have been changed at least once. And I predict that they will change again at some point in the future once the results of the ongoing study with the current criteria have been analyzed and published.

Does this rule out AS for you? That is a decision that you will have to make. AS protocols at different institutions do vary and it would be of interest to research others to see if you might be a candidate at another place.

CC52 said:

Nothing else to say

Swingshiftworker said all that needs to be said.

Good luck to you!

CC

I was 62 years old when my PSA hit 11.1. DRE found a bump. Got a biopsy, 12 of 12 cores were dirty - acinar adenocarcinoma, Gleason (4+3) = 7. MRI & bone scan showed extensions in the upper left and lower right quarters. I was rated T3c N=0 M=0. Got robot - assisted Radical Prostatectomy in Dec of 2012. 35 gram tumor, positive margins, 1 seminal vesicle involved. No lymph node involvement. Some perinueral invasion, affected nerves removed. Final Gleason was (4+3) = 7....right on the cusp, as it were.

Did Firmagon starting 2 weeks after surgery for 3 months, then Lupron, then Eligard. Last 6 month hit of Eligard was on my birthday last Oct. After the first 3 months on Firmagon I did 2 months of daily radiation - 40 sessions, about 80 Grey total. The radiation oncologist said "The horsie hasn't left the stable yet, but he has got his head out and he is looking around."

I was put on daily Cialis to elevate nitrous oxide (not for sex as I have neither ability, interest or desire at this time) and a penis pump to keep the spongiform bodies functional. Also a prescription to take a 1 hour afternoon nap every day.

I am very well educated in the sciences, I understand that the treatment I recieved is state-of-the-art for locally advanced PCa like mine. Also that the doctors (I had a team) had all agreed that I was healthy enough to get through this well and that if the cancer didn't get me, I was likely to be around for quite some time.

Yes, none of this has actually been much fun, but I started out very physically fit with a good attitude and the support & assistence of my family. My last blood test 2 months ago gave me testosterone of 2.2 ng/dl & PSA undetectable, as it has been since Jan of 2013. Next blood test is in 2 weeks, then next meet with the doc is the week after. At that time I expect to be let to move to my new normal as the last of the Eligard clears, likely in 2 - 4 months (as I am informed). Yes, I lost about 2 inches of my penis...it seems to have partially filled the void left by the removal of the prostate rather than actualy getting smaller though, so it is more like 'retracted'. It can and does come back out though, and I don't really care what others think of that. It does not upset my wife of 25 years, we value other stuff a lot more.

In my thinking, there is no cost without a commensurate benefit. I have paid a price and have been in this sometimes painful experience, but I have profited significantly from all that I have been through as well. If nothing else, it is really strange to have a non - sexual perspective on life events. Many things seem so silly from here.....

I also suggest talking to a bunch of different folks and getting those alternatives. Get a really good picture in your mind as to eactly what kind of beast it is and how nasty it can or will get. I must tell you not to let fear guide you, but follow the facts. Pain is transient and a life can be long.