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Active Surveillance or Radical Prostatectomy?

bob4894
Posts: 23
Joined: Feb 2015

My PSA result last month was 3.46 which was up from 2.76 two years ago.  Had a 12 core color doppler biopsy last week and was told yesterday that I had a Gleason score of 3+3 in one core <10%.  I am 54 years old and my urologist at USC said I have two options; 1) Active Surveillance or 2) Radical Prostatectomy via Di Vinci.  I have read about the side affects of having my prostate removed and wanted to see if anyone has any information on progression of prostate cancer during active surveillance. 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Bob,

I am sorry to read about your diagnosis.

I have been enrolled in an Active Surveillance protocol with delayed treatment if necessary for the last six years. Please feel free to click my name for information about what the protocol is that I have followed, and pertinent information about Active Surveillance.

I wonder if you have received a second opinion by an expert pathologist   who specializes in prostate cancer so that you are not under or over treated

I am also in the los angeles area . There are local support groups in various locations depending on where you live. I live near long beach, and can direct you to support groups in the area if you wish. Where do you live?

For the most part Active Surveillance is not age dependent. In fact there is a man where I am treated who was diagnosed at 35 years.Generally about 75 percent of these cancers do not progress.

Your doctor recommended surgery or Active Surveillance. I bet that he is a urologist since there are other active treatment types available that you can consider if you wish to pursue an active treatment.

Here is a recent discussion which may be of use for you.

http://csn.cancer.org/node/288844

More

http://csn.cancer.org/node/245500

bob4894
Posts: 23
Joined: Feb 2015

I have a Urologist at USC.  I will be seeking a second opinion from the Urology Dept at UCLA.   Still undecided about surgery or active surveillance but leaning toward surgery because I am scared of having this in me.

 

Thank you for responding to my post.

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

 With low readings like yours, you have time to study, get a second and other opinions, and then make a decision about treatment. Prostate cancer is not much fun, but most of those of us who get it manage to adjust and continue to enjoy life.

Not bragging, but I am a 24 year survivor of prostate cancer, and at age 88 my physical and mental health are OK and my cancer is in remission.

You are younger than my children. I am sorry you must face this situation. I wish you the best of luck.

As I tell my neighbors in this retirement community, keep smiling and hold your spirits high.

 Old-timer (Jerry)

 

 

Old Salt
Posts: 720
Joined: Aug 2014

As Hopeful already pointed out there are several other options to consider.
Removing the prostate is indeed radical and can bring on a host of other problems. Why not choose Active Surveillance and see how your case progresses. If your PSA does go up, you can consider all the options at that time. New approaches to prostate cancer treatment are not at all inconceivable.

In the meantime, let's hope that your prostate condition is stable.

bob4894
Posts: 23
Joined: Feb 2015

My color doppler showed no indication of a tumor and dr ukimura at USC said the size of my prostate 49.7 was average for a person of my age.  He also did not spot any tumors upon viewing my prostate and decided to go with the minimum number of 12 biopsies (said he could take up to 20).  Thought I was in the clear but as my results indicate I was not.  Now I am concerned that a higher gleason was missed and I don't have all the information available I need to make an informed decision.

 

Thank you for responding Old Salt

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

Bob

Welcome to the board.

You got a positive result and now want to act but need some clues. I would recommend you to read past threads, do some net researches, talk to survivours and get second opinions from specialists before any decision. You do not need to rush to a decision. Prostate cancer do not spread overnight and allows us time to find details about the diagnosis and treatments.

Here is the story of a member in this forum with similar experiences that may be of interest to you;
http://csn.cancer.org/node/292216

http://csn.cancer.org/node/203437

Best of lucks in your journey.

VG

sandflylarry
Posts: 9
Joined: Feb 2015

I had my dyagnosis in June of 2014. My PSA was 7.2. I had prostitis before and the doctor said it could be a reacurance so he treated me with antibiotics for that.  After the antibiotics, I was tested again and my PSA was 8.4. Did the 12 point biopsy and 7 out of the 12 were positive with a combination of 3+3 and 3+4. They told me that the location of the cancer was critcal because of the cancer spreading to my bladder and I elected for the robotic surgery. After the prostate was removed, the average was 3+4=7 and all the margins were clear and the surgery was nerve sparing.  I am 56 years and wasn't going to deal with having it spread somewhere else and causing more complications later.  Your PSA is alot lower and sounds like it is alot less agressive.  I would talk to your doctor about nerve sparing and possibly saving the sphincter at your bladder neck and by waiting, could it jepordize any of that.

good luck with your decision

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Bob,

I am curious why your urologist did not mention the numerous radiation therapies out there also?  And why is open surgery not an option ? I had da Vinci recently, but I would not have appreciated the surgeon saying da Vinci "was all that was available."  It may be the only thing available that will pay for the hospital's da Vinci machine.... All PCa treatments have some side effects. The game is deciding which side effects are more likely with which treatments, and which reasonable option for treatment you want to bet on.

As to disease spread while on AS: the good news with AS is that your disease is carefully monitored, and any changes will be discussed with you when or if the time comes. I never used AS, but as you have already seen below, several guys here have had great results with it.

max

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Urologists are required to mention all treatment types to a newly diagnosed patient.

 

I am familiar with USC.

 

About 6 years ago they hired a Dr. Inderbir Gill who is a wiz at surgery, away from the Cleaveland Clinic to be in charge. He brought other top surgeon from the Cleaveland Clinic to work at USC. They have an execellent surgery department.  During this time the ranking of the USC prostate oncology departments have improved.

 

I can only guess that his urologist is directing Bob to their surgery department( for profit motive) which actually happens to be excellent

 

 

 

 

 

 

 

 

 

bob4894
Posts: 23
Joined: Feb 2015

My urologist at USC gave me the two options but indicated that because I am young, he thought that having the surgery would be best for me.  I've been reading quite a bit on the internet about active surveillance but still unsure what to do.  My uro did mention but radiation but moved quickly to surgery when I was diagnosed last week.

 

Thank you for responding and providing Dr. Inderbir Gill name.  Should I ask for Dr. Gill to do the surgery?

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Bob,

First be advised that you are in no rush to make any decision now...it is important for you do do research about this beast.

It is possible that you may not in fact have prostate cancer; that the pathology of your tissue was read wrong, so a second opinion from an outside expert pathologist is appropriate.

Also before any treatment choice it is important to have a multiparametric MRI with a T3 magnet to determi ne extracapsular extension, and suspicious lesions in the prostate, and how extensive or not. This will affect your treatment choice.

I first choice is AS.

As far as surgery, the results of surgery are age related . The younger the patient the better results......less ED and incontinence....you are consider young.

As far as surgery there are various surgeons in our are that are excellent at UCLA, City of Hope, UCI. There is another surgeonthat I know about  at USC who is excellent.He also published a lot.  He is a relatively young guy. HIs name is , and I'm not sure of the spelling, is Desai....at any rate he is one of the Indians who came from the Cleveland Clinic to USC.

there is a guy in NYC,  Ashutosh Tewari , here is a site. Dr. Tewari develop a procedure to preserve sexual abilities which the other ones do not have.    http://www.nycrobotics.com/

.................

I still recommend that you attend local prostate support groups, read books and research.

.....................

I like AS surveillance. As a young man why have a radical treatment that can cause side effects for the rest of your life?







bob4894
Posts: 23
Joined: Feb 2015

I would appreciate very much if you could send some information on support groups.  I live in Chatsworth, Ca.  which is in LA county but is also close to Ventura county.

I appreciate you providing guidance on procedures that can help me make a treatment choice (MP MRI).  I have a 2nd opinion scheduled with another urologist Leonard Marks at UCLA for next week and I will ask him about the MP MRI.

Thank you Hopeful & Optomistic.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

There is an international organization call USTOO.org . Go to their site to detemine local chapter...additionally they publish a monthly information  about prostate cancer called "hot sheet" whichI suggest anyone with prostate cancer read.

L. Marks, you have an appointment with a world class urologist,  He is an expert's expert about Active Surveilance, and has the lastest and best equipment available. Listen vey carelfully to every word that he says. Good luck.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Bob:  You have other options.  Not just AS or RP. 

There's also radiation treatment. IGRT is the most common but IMO CK is the best of the available methods.   Lots of info previously posted by on CK by me and others.  You can also check out Accuray's website (the maker of CK) and visit the patient forum there for additional info.

Good luck!

tarhoosier
Posts: 195
Joined: Aug 2006

There is no reason scientifically or medically that a urologist should go to surgery with a patient with numbers such as yours. This is the very minimum of cancer that can be detected. In fact there is some discussion whether G6 is to be called cancer. My local medical center, one of the largest groups in the country, will not recommend surgery for a patient such as you, only AS. The side effects of surgery, known and unknown, will last a lifetime for you which can be many, many years.

The whole idea of surveillance is that any treatment can be as effective later rather than now and the knock on effects are limited only to later if ever, rather than now.

The comment that you are possibly deciding based on fear is a sign of faulty logic. It is understandable. It predicts regret.

bob4894
Posts: 23
Joined: Feb 2015

Tarhoosier,

I was not aware that there have been discussions on whether g6 should be called cancer.  I've been trying to educate myself since my diagnosis last week so I do make the right decision regarding treatment.  I appreciate your input and I will be seeing Dr. Leonard Marks at UCLA next week to discuss the active surveillance strategy.

Thank you.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Everyone calls Gleason 6 cancer "cancer," except perhaps some insurance companies.

max

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Several sites show when the above is goggled.

Gleason 6 cancers has been a discussion point, mainly because many men over treat when they hear the word "cancer".

Here is one of the many sites. There are differing view points among the other sites.

 http://prostatecancerinfolink.net/2014/01/23/should-gleason-6-really-be-called-cancer-a-brief-review/

 

 

bob4894
Posts: 23
Joined: Feb 2015

So much information on treatment options.  I struggle daily on what to do.  Because of the randomness of the biopsy process, I keep thinking that there may be some GS 4 somewhere as 20% change on re-biopsy or RP. 

----------------------------------------------

PSA

Jan 2013 - 2.76

Mar 2014 - 3.12

May 2014 - 3.4

Jul 2014 - 3.5

1/30/2015- 3.46

Color Doppler Biopsy 2/12/15 - 12 cores.  1 core Gleason 3+3 <10

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Bob,

I understand the agony of deciding on this. As we have discussed, my case was very similiar to yours, except that my Doubling Rate was significantly faster than yours, but at around 1.0/year, even mine was not cause for imediate action.  You are actually experiencing virtually no increase presently.

If you retrace my decision-making at my threads, you will see that I actually had resolved for radiation, and changed to RP only later, for a few technical reasons (urinary obstruction mostly).   At five weeks since surgery, I have few regrets. My urinary control is doing well (I wear only "liners").  I was fortunate and the doctor said he spared the erectile nerves, but recovery in that arena reportedly takes a good bit longer than urinary control.  Even radiation can cause some symptoms of ED, however.

Go slow, read a lot,  and realize that all of the best doctors say that there is in fact no such thing in most cases as a "best" decision regarding which treatment to go with.    The most recent IGRT and CK results are virtually identical to surgical removal today for long term cure rates. In general, radiation is becoming better and better, while surgery, obviously, is essentially static in its results.

max

 

bob4894
Posts: 23
Joined: Feb 2015

Max,

I just clicked your name to the left.  Is that your thread?

Thanks for advice.  I'm know everyone here knows that I scared but I'm trying hard to not let fear cloud my judgement.  Gonna check out IGRT and CK results now.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Bob,

My thread that traced my own treatment decision is entitled, "Please Send Membership Card." My journey is similiar perhaps to many; if nothing else it will show that other guys have the same  confusion and ambivalence that you are going through. Our  clinical presentation and ages are similiar, but no two cases are ever the same. Urinary restriction, for instance, had a significant role in guiding me toward surgery. Even rapport with one doctor verses some other doctor effects some guys, rightly or wrongly.

My more recent thread is titled "Post RP", but it just discusses my questions and issues since surgery, which has only been about five weeks ago.  

I will volunteer that I wore a cath six days, and then an Attends (diaper) one (1) day, before deciding it was unnecessary. I then changed to "guards" (similiar to women's panty liners), which I still use. From what I have read this is great, better than normal recovery, for which I am thankful. Urinary control post-op can take months or more.  Sexual recovery takes a lot longer (commonly a year or more). Just laying out what RP did for/to me, and as I noted, my post op has been easier-faster than most. Other guys stories are different.

max

 

 

bob4894
Posts: 23
Joined: Feb 2015

Max,

Haven't really been doing too much research regarding after care for RP.  I know there will be incontinence and ED as every story I read pretty much says the same thing. I just thought that ED would be mitigated with Viagra.  2 days out from my consult with Dr Marks to get his opinion on my results and see what he has to say about active surveillance.  Anxious.

Thanks

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Bob,

At you initial visit with Dr. M , he will decide when it will be appropriate to have an multiparametri MRI and biopsy.( I don't know what the wait time will be)..this will give you a pretty good idea of where you stand

At any rate there is no rush. The initial diagnosis that you have had is a low volume, low aggressive disease.....so far you appear to be a perfect candidate for AS.

Even if there is a 4 somewhere in there, you still do not have to rush.....just keep on doing research.

 

 

bob4894
Posts: 23
Joined: Feb 2015

Hopeful and Optimistic,

Thank you for providing web address for USTOO.  There is a lot of information on this site!  And I was able to find a support group close to my home.  The site also has a list of questions I should be asking my doctor and will be bringing that with me to Dr. M.

Thanks again!

 

Old Salt
Posts: 720
Joined: Aug 2014

but really, if your prostate deteriorates in the future, there will still be many options for treatment.

I am  rather of the philosophy to not overly worry about issues that I don't know about or can't control.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Thank you for the link, Hopeful.  I Guess G-6 is possibly similiar to PIN-cells; pre-cancerous or proto-cancerous.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

Bob,

When we are diagnosed virtually all of us go through all of those negative feelings. This lasts about two or three months. During this time,  we , the patients are faced with making a decision from a choice of treatments, all of them negative, that can severely impact our lives. To complicate this, there are sharks out there who are touting their treatment type, sometimes at your expense, so you need to develop knowledge so you will not be a victim.

There are strategies to help with your emotions; surround yourself witrh positve people. If you attend religious services have an upbeat clergyman, if not switch, even if it's to a different religion..."upbeat" is the key. Attend support group(s). Keep on posting here.

Generally when a person is diagnosed , the first inclination is to get the "cancer" out. This can have serious side effects. This was my first thought, but instead, I did a lot of research, and am in an Active Surveillance program for the last six years, where I have had no side effects, and believe that I can seek active treatment if necessary, using my initial treatment choice with equal amount of success as I would have done. In fact since i have been successfully on Active Surveillance(with no side effects) for the last 6 years, I have investigated "newer and better" treatments which I will probably pursue if necessary (which may never be)

 

Please feel free to click my name to the left to follow what I have done, and information that I listed about Active Surveillance.

 

CC52
Posts: 103
Joined: Nov 2013

Bob,

First off, my regrets for your diagnosis. Secondly...PROCEED SLOWLY!!

One of the great aspects of this forum is the wide variety of opinions and experiences of everyone here. I don't know that I can add much to the conversation that hasn't already been said, but if you care to follow my story, here is the link: http://csn.cancer.org/node/264905.

Ultimately, the decision is a very personal one, and there is no "one size fits all" answer. Take your time...do your study...make the decision that works best for you.

Best wishes - CC

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