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Newly Diagnosed 3+3=6 and I am toatlly confused.

confusedintexas
Posts: 1
Joined: Jun 2019

I recently underwent a TURP due to BPH.  I have had several bouts of prostatis over the years and a bladder stone that had to be removed.  After a year or two on flomax/finsteride I opted for a urolift to maintain body function.  I got about three years out of it and was right back where I started.  So, knowing what it would do to my sexual function I had a TURP last week.

The samples removed during the TURP were sent to the lab and came back from pathology scored 3+3=6 on the Gleason scale.  My doctor was shocked as was I because my blood tests have been good and nothing has every came up on a DRE.

The kicker is that I am 49.  My understanding is that if I was in my 60s they likely wouldnt treat me of just keep an eye on me.

Due to my age my urologist is recommending taking out the entire prostate. Because he is banking on me living into my 80's.  Not unreasonable for my family.  (No males in my family have had prostate cancer though almost all of the have had BPH and a Turp at some point.)

Taking the entire thing out scares me a lot.  The side effects of loss of sexual function and bladder control would be devestating for me.  The urologist mentioned shots and pumps if things didnt work right.  I cant even take flu shots because needles scare me to death.  I have zero pain tolerance.  I am not sure how much time span is worth trading for that quality of life. 

My questions are:

1) Do I need to treat this at all?  There are two very different schools of thought on a 3+3 score.

2) If I dont treat it what kind of risk do I have of it getting worse and taking me out?

3) If anyone had the entire prostate removed what was your experience?

4) If you had it removed would you do it again?

5) Is anyone out there my age with this same score?  What did you decide?

Thanks,

Confused In Texas

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Welcome.  With a gleason of 6, looks like you have a lot of time to ask a lot of questions to a lot of doctors.  If I were you that is where I would start.  The bottom line is that this is your decision.  I would think the normal protocol would be to get a 3T MRI of the prostate and get a fusion biopsy, if possible.  Then when you have a definitive biopsy of your prostate, I think that will point you in the right direction.  If that too comes back Gleason 6, at your age, no family history, I would be looking for the Active Surveillance (AS) approach (wait and see, look for indicators as to what the cancer is doing).  Some of the curative side approaches to prostate cancer are radiation; surgery; laser ablation.  So, try to settle down a little.  You are still you.  You just know something now that you did not know before.  Do your homework and make a decision.  On this site, there are some very knowledgeable folks.  Please provide as much information as possible.  My experience with having my prostate removed (3/18) is:  PSA undetectable; pretty much fully continent (except for partner yoga); ED around 75% recovered (been this way for a while).  Some potential side effects:  incontinence; ED; urethra shortening; potential hernia.  Surgery is permanent.  The gland is not going to grow back.  Look at the mechanics of the systems involved.  Radiation also has side effects.  I chose RARP (robot-assited radical prostatectomy) based on what my doctors (2 opinions) told me.  If I went back in time, yes, I would do it again, but I am 68 (69 in September).  My Gleason was 4+3; I talked to both radiation patients and RARP; and open surgery patients.  Like I said, I would think you would be looking at AS.  Hope this helps.  If you want to know a little more about me, I have pretty much put everything I could about my RARP on this site.  Right now I am also one of the spotlight members on their home page.  I am as happy as my picture indicates.  My quality of life has not changed much.  I hope yours does not change much.  Good luck on your journey.  No two are the same.

Tech70
Posts: 53
Joined: Nov 2017

#1. Specimens from your TURP give absolutely NO indication of how much cancer exists in your prostate.  Only a biopsy will give you that information.  A 3T MRI MIGHT show a lesion; however my 3T showed no detectable lesions after my first biopsy showed one core positive with 10% of the core showing Gleason 3+3 cells.  If your biopsy shows positive areas of Gleason 3+3 cells, request that the positive samples be sent off for genomic testing such as Oncotype DX.  This will give you a numerical indication of how aggressive your cancer is and probability of future morbidity.  #2.  I would seriously consider a second opinion from a second urologist and perhaps a medical oncologist.  In my opinion, your urologist is WAY jumping the gun by immediately suggesting radical prostectomy.  At this point you have no idea of the extent of the cancer within your prostate.  Also, what is your PSA and, if your urologist has measured the volume of your prostate, what is your PSA density?  #3. Read, read, read.  You are making a good start by joining this forum.  There are many other sources of information such as NCCN which has published a comprensive guide to prosate cancer.  One particularly informative book, ignoring it's whimsical title, is Invasiion of the Prostate Snatchers. #4.  Time is on your side.  Don't rush into any decison. Gleason 6 PCa is slow growing.  Active surveillence is immediately reversible at any time.  Any side effects from surgery can last forever.

Clevelandguy
Posts: 456
Joined: Jun 2015

Hi Confused,

First of all if it was me I would get an MRI or other scan to determine where the cancer is located. If it’s buried deep inside the Prostate you have time to research and decide.  If your cancer is close to the edge of the gland you might need to act sooner.  First, all treatments have side effects ranging from mild to severe for surgery and radiation.  Once you know where your cancer is located you and your Urologist and Oncologist can map out a treatment plan.  At 3+3 you should have time to do your research and yes you can do Active Survalence for a while.  Some people have been doing AS for quite a while but the cancer can become more aggressive with time.  Once they locate the cancer I would want another biopsy to confirm the previous 3+3.  Keep us posted on your results so we can chime in with our experience.  I had robotic surgery almost five years ago, no ED, zero psa, and very minor leakage and yes I would do it again.  I don't mean to be a downer but at your young age you will probably need to deal with your cancer at some point in the future.  There are a lot of survivors with good quality of life so I think its very important to pick the best doctors and facilities for your journey.

Dave 3+4

 

JJO
Posts: 10
Joined: Sep 2017

I wouls suggest going to an academic medical center or some other place that has an extensive active surveillance program.   While your age is one reason to worry to want to make sure the cancer doesn't progress, it is also a reason to try to avoid the side effedts of treatment.  I believe I hve read that more and more research is showing that a young age should not preclude active surveillance.  However, this is why you need a doctor who is up on all the latest research.  That means finding a uro who specializes in urologic oncology.   That's somebody who doesn't have to keep up on the latest resarch on kidney stones and all the other stuff uros do.  

Just to give my own example, my uro was nervous about having me on AS, despite having a very small amout of Gleason 6 cancer.  He's a good uro, at Norwestern, but not a cancer specialist.  I went to a specialist at the University of Chicago and he assured me AS would be completely safe in my case, and that's what I've been doing.  

VascodaGama's picture
VascodaGama
Posts: 3013
Joined: Nov 2010

Texan,

I had similar questions when diagnosed at the age of 50, in 2000. Answers were vague and the doctor didn't help too. I and my wife had to decide by ourselves on an option. I was confused too. After diagnosis we went through the hell studying everything we could hold to. The decision come two and a half months later after several second opinions.

The above survivors have given you excellent opinions. I will answer your questions based on my own experience but none two PCa cases are equal so that you have to figure out what most pleases you. Please research under my achronym VGama for details on my story (Gleason score (2+3) 5; PSA=22.4; asymptomatic; negative image studies and DRE)

1) No matter which type of Gs6 you got, you should follow a treatment thought to be the best to your case. Postponing a therapy is OK but not treating is bad. AS is considered a therapy too.

2) Cancerous cells are those that have lost the ability in completing the natural life cycle of cells. These multiply but never die, growing into tumors continuously.
Those that perform indolently take longer to cause problems along the life span of a person. One needs to find his own type of PCa.

3) I had prostatectomy which included the dissection of the gland and 9 lymph nodes. Surgery was a success as I come out alive but the side effects deteriorated my quality of life. That was 19 years ago. I managed to survive.

4) Soon after surgery (one month later) I was declared with biochemical failure that latter become recurrence. I was in need of a salvage therapy meaning that my choice with surgery hasn't been the best. I would not recommend surgery to those presenting a risk of having extraprostatic extenssions (non contained case).

5) I wonder about your meaning of score. Gleason 6 is not enough to judge anything. You need several exams (CT, MRI, PET, BS, etc) before getting a due clinical stage from where to decide on an option. In this forum you may find several patients younger than you. Your family should be involved in the final decision.

Best wishes and luck in this journey.

VG

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3294
Joined: May 2012

Confused,

For the last several decades, any time a prostatectomy is performed, it removes the whole gland; hence the term 'radical prostatectomy.' In surgery, 'radical' simply means 'all.' Partial prostatectomies are virtually never performed any more, for any reason. For some reason that doctors do not yet understand, men who diagnose before 50 seem to have, or develop, more serious cases of the disease than men who are diagnosed closer to the average age of discovery, which in the US is currently around 67 years old. This is a generality and does NOT mean that your disease will be aggressive -- it is just a view held by people in the field. You must have a biopsy to make any sort of informed decision regarding how to proceed, but in most cases of minor disease, A.S. or radiation therapy are frequent, viable choices. 

Clean blood draws are meaningless in assessing or diagnosing PCa, except PSA results, which are very important.  Heck, I had highly advanced lymphoma discovered in 2009. Lymphoma is a blood cancer of the WBCs, yet even my blood tests were all perfect prior to the CT that showed massive nodes everywhere.  Also, a DRE only checks the lower-rear of the gland (no pun), and says nothing about the front portion.  It is wholly possible to have stage II or III disease, and always have negative DREs.   I had Stage II, and all of my pre-surgical DREs, done by several different urologists, where wholly negative.  It is better to have a negative DRE than a positive one, but negative results preclude nothing.

max

MK1965
Posts: 177
Joined: Jun 2016

Hi confusedintexas,

i am also Texan. Had exactly same situation as you in 2016.

On June 1, 2016, had TURP and bladder neck resection. Stayed overnight in hospital and went home next day with catheter which was reinserted after failed voiding trial. Came back to see urologist on June 9 for catheter removal. After catheter was removed, urologist said that my pathology report came back positive for prostate Ca, Gleson 6  so I was incidentally diagnosed with prostate Ca which was shocking news for my wife and I. I needed biopsy in a couple of months after prostate heals from TURP.

I had biopsy on August 11 and 7 days later pathology report came back positive with Gleason 7 (4+3) one core at 15%.

On Nov 2, 2016, I had RARP which was my wife choice.  RP was with bilateral nerve sparing and I had 8 lymph nodes removed.I wanted to do radiation particularly LDR brachytherapy. RO was kind of against Radiation because of my age (51), Gleson 7 (4+3) and recant TURP.

I recovered urinary continence to about 99% ( still have stress incontinece especially on any kind of physical excertion.)

I was not lucky with erectile function recovery. I did everything possible: Cialis, Viagra, VED pump, rings, TRIMIX, BIMIX and nothing worked or partially worked with some long lasting pain after use like with TRIMIX.

For 22 months after RARP, I never experienced any sign of life in my penis, not the slightest one. Before RP, I never had any problems with erections, always worked. Never tried Cialis or Viagra before RP , never needed them. I was healthy, not on any medication, no chronic conditions, non smoker, non drinker, not overweight and excercising regularly 4-5 times a week.

TURP and RP, in my case, turned to be a disaster and greatly lowered my QoL.

it is not that many of us here who were incidentally diagnosed with prostate cancer.

Take your time, do all possible test like mpMRI, biopsy, get second opinion on biopsy slides and do not rush into treatment unless it is realy needed. Once you cut it, then everything becomes too late. Only good; my PSA is undetectable since RP.

I hope and pray for you, whatever you choose, to be good one.

MK

 

ASAdvocate
Posts: 116
Joined: Apr 2017

All the medical associations that issue guidelines for the treatment of prostate cancer recommend active surveillance for low risk men.

 

I have been on AS for ten years with no progression. Why risk the possibly life-changing side effects of treatment if you don’t need it?

 

But, surveillance must be active, and that means following a regular testing protocol.

 

I would suggest that you buy a copy of Dr. Mark Scholz’ new book The Key to Prostate Cancer. He interviewed 30 prostate cancer experts and presents their descriptions of the treatments that they provide for men at different risk levels.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3294
Joined: May 2012

Thinking of AS's comment, I have a friend who was diagnosed with minimal PCa at the age of 60 (low PSA, Gleason 6, low volumetric involvement) who went on AS.  He is 75 today, and doing great.  He did recently have a slight uptick in PSA, and is scheduled for a biopsy, but the doctor is little concerned.

max

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