Just Diagnosed.....

Uh_Oh

Hi, all. New here!

I've gone over a year and a half of various PSA readings, from 4.85 (9/2013 & my first ever PSA after turning 50 & was referred to a local uro practice) to a high of 6.7 (which bought me a TRUS biopsy-negative), back to 4.3, and then 5.7, 5.3, which is when the uro suggested a 24 core saturation biopsy. I really didn't want to do this. The aftermath of the 12 core was gross enough so I sure didn't think 24 needles was going to be any better and I feel as though the docs are shooting blind and hoping to hit something. I decided to seek another perspective, and for all that I don't like politically about living in Maryland, Johns Hopkins is a short drive away. I saw Dr. Carter at Hopkins earlier this month and had another blood test, which resulted in a PSA of 5.8 and fPSA of 17.4. It was decided that I'd have a MRI done, which showed a "suspicious area" after the scan. The next week I had a MRI-guided fusion biopsy with Dr. Carter, which I found out last week showed 2 of 14 cores positive, less than 5% involvement each, Gleason 3+3=6. The pathology report was reviewed by Dr. Epstein. The MRI also showed it was prostate confined. All DREs have been negative.

I have an appointment with the doc April 1 (figures!) to discuss treatment options. The doc assured me that in no way am I in a "life threatening" situation, that it's very treatable, and on a scale of 1-5 on the risk scale, I'm only a "1." At "only" 51.5 years old, I don't know what he'll suggest. I believe he also said that even in 10 years my situation isn't likely to change much. I guess I'm hoping he says I don't have to really do anything for the time being, other than monitoring. If I can make it a few more years, that gives me a bit more time to try for more "guilt sex" with the wife-LOL!

I have to say, turning 50 hasn't impressed me much thus far!

 

 

 

 

 

 

 

Old-timer

You are OK

It is my experienced opinion that, based on the information you gave, you do not need to accept any treatment. You are smart to look into the matter, get checked out, etc. It sounds as if you are doing that. I commend you and wish you the best.

You are right, turning 50 is a big deal. It was the only big one I was not eager to meet. I very much enjoyed arriving at all the other big ones. Now I am 88 and contemplating 90. My wife of nearly 66 years turned 90 yesterday. My experience with prostate cancer began 24 years ago. That is enough bragging. I just want to give you young folks the message that life can be good up here too! 

Old-timer (Jerry) 

hopeful and optimistic

Active Surveillance for you._

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

Old Salt

hopeful and optimistic said:

Active Surveillance for you._

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

Agreed

Active surveillance seems like the best solution for you. And you are already a patient of Dr. Carter (who heads that program) at Johns Hopkins University Hospital.

http://urology.jhu.edu/prostate/advice1.php

Uh_Oh

hopeful and optimistic said:

Active Surveillance for you._

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

Hopefully I'll be doing a name change soon! I didn't pay much attention to the MRI at the time. I was thinking so much about if they were going to stick a "coil" up my rear-end that I couldn't concentrate! They didn't, thank God! LOL!! I notice on the test report it says "MRI 3D Reconstruction On Independent Workstation" and in the report narrative "TECHNIQUE: Imaging at 3 Tesla performed at JHH. Coil: Body Matrix coil" -- we'll see if I can opt into active surveillance at the doc meeting.

hopeful and optimistic

Uh_Oh said:

Hopefully I'll be doing a name change soon! I didn't pay much attention to the MRI at the time. I was thinking so much about if they were going to stick a "coil" up my rear-end that I couldn't concentrate! They didn't, thank God! LOL!! I notice on the test report it says "MRI 3D Reconstruction On Independent Workstation" and in the report narrative "TECHNIQUE: Imaging at 3 Tesla performed at JHH. Coil: Body Matrix coil" -- we'll see if I can opt into active surveillance at the doc meeting.

 Here is a study at

 

Here is a study at JohnsHopkins that I was able to google based on the information that you posted

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3978179/

 

Good luck with the follow-up appointment that you will have with Dr. Carter.....I've read  some of his work........you will be in good hands.

 

I suggest that you acquire knowledge, read books, attend local support group(s), keep on posting here with questions, determine information about various treatment options

 

Notify relatives about your diagnosis, since there is a potential increase of diagnoses among family members of PCa patients. I suggest that they discuss with their medial porviders

 

PS When  I was first diagnosed, I had a 1.5T MRI and a spectroscopy that i had to pay $ 900.00 dollars for since it was considered investigational...at that time I had a coil (or in my mind a HOSE) up my butt. What fun!

 

 

 

 

 

VascodaGama

These guys are precious

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

VascodaGama said:

These guys are precious

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

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

Swingshiftworker

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 Other Risks of Cancer??

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!!!

 

 

hopeful and optimistic

Swingshiftworker said:

What Other Risks of Cancer??

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!!!

 

 

wonderment

As a lay person I am in wonderment by the discussion that you had with Dr. Carter b yhis  recommendation that you not engage in an active surveillance program, not have a form of radiation, and only  consider surgery because of your age. Although I am in wonderment, I am not surprised by his directing you to surgery, since he is a SURGEON. Generally surgeons recommend surgery, radialogist recommend various forms of readiation.

You are the CEO of your life and YOUR treatment choice. As Swing strongly recommended, take the time to research, I can only agree with this.  You and your wife need to research your options, to include but not limited to various forms of  radiation. I also suggest that you get a second opinion by another doctor who manages Active Surveiillance patients.

There is a new treatment that is being done called "focal laser abalation" that is less invasive than other treatments. It is being done on a limited basis. It is very new and  is a devoloping treatment  that you may wish to investigate..it is a MRI guided treatment..there is a discussion about it at the USTOO discussion site.

Some thoughts for research are to attend local support groups. USTOO.org, international organization list local support groups that they sponsor at their site. They also publish a monthly HOTSHEET that provides up to date information that is worth reading. Read books, internet research...keep on asking questions here.

Remember PCa is slow growing. You have time to make the best decision for you....Do you homework.

Best

H

 

Max Former Hodgkins Stage 3

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

Questions

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

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

Timlong

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 agree with your wife....

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

 

 

 

Old-timer

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

Part of my story might be useful to you

Ron,

My thoughts, decisions, and experiences during the 24 years I have coped with PC may be interesting if not useful to you. Every PC situation is different in one or more respects. Just because I am old and PC experienced does not empower me with superior understanding; and, in no way, am I qualified to tell you what you should do.

I faced the decision that you are now dealing with in 1991, when I was 65 years old. I felt the way you say your wife does. "Get the thing out of there." My education about the problem and possible treatments was meager. Based on a sympton (cloudy semen) and a PSA reading of 4.0, my primary care physician referred me to a urologist. The biopsy report indicated PC. As the urologist recommended, I read a booklet on the male anatomy and discussed radiation treetment with an oncologist. To shorten a long story, I selected prostate removal as the treatment. That worked for awhile, but it was not the end of the matter. After 13 years, the cancer returned. Radiation failed to stop it. Seventeen years after surgery, I was placed on hormone therapy. That lowered the PSA to "undetectable." That is where it is today, nearly 24 years after RP.

I am OK about what I have experenced with PC. It was something with which I had to deal. Yes, there have been negative effects. In some repects, however, PC seems to have enriched my life. It gives me an increased awareness of the value of life. Obviously, sex is not what it used to be. It's different, but good. I think it is as enjoyable, or maybe even better than it was before. My bride of 65 years and I have been and continue to be partners in dealing with this matter.

I will watch your story as it unfolds. Lots of luck to you and your family.

Jerry (Old-timer)

Uh_Oh

It's a tough call.....

I have my wife, who just "wants it out" and a doctor, who is a pioneer in AS, wanting to take it out.

 

Where to go.......?

Swingshiftworker

Uh_Oh said:

It's a tough call.....

I have my wife, who just "wants it out" and a doctor, who is a pioneer in AS, wanting to take it out.

 

Where to go.......?

It's Your LIfe . . .

What do you want?  That's what matters.

Your doctor is just an advisor and he is only of one opinion. You need to speak to others.  Your wife has NO idea what kind of pain and suffering you may experience if you undergo surgery AND how much of that pain and suffering she will have to share, especially if the surgery goes badly.  You have to make her realize that "cutting it out" is not necessarily the best course of action.  It may ultimately be the choice you make but that should be an INFORMED choice and it will not be one if you are BULLIED into choosing surgery by your wife and/or others.

Surgery is an IRREVOCABLE life altering decision that has gone VERY BADLY for many.  You have the time to do the additional research on alternative radiation treatments.  Take it!

Good luck! 

VascodaGama

Being able to decide

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

Max Former Hodgkins Stage 3

Uh_Oh said:

It's a tough call.....

I have my wife, who just "wants it out" and a doctor, who is a pioneer in AS, wanting to take it out.

 

Where to go.......?

Overload

Uh-Oh,

I know you may be in data overload at the moment, but in response to your rhetorical question, let me suggest again: Go see a good radiation oncologist. You have already spoken to a surgeon and an A/S expert.

A radiation oncologist is the obvious, almost glarring, next referral to make.   I am not recommending that you choose radiation; I am instead only saying that you owe it to yourself to investigate it before your monumentous decision.   

.

 

.

Old Salt

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

Explanation

 

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

Nothing else to say

Swingshiftworker said all that needs to be said.

Good luck to you!

CC

stoniphi

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

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.