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Picking Surgeons

Rob.Ski
Posts: 12
Joined: Feb 2021

What is the best way to research Surgeons?  Anyone recently get prostate surgery at CTCA Philly?

VascodaGama's picture
VascodaGama
Posts: 3320
Joined: Nov 2010

Hi,

You can inquire directly the center CTCA of your choice about their doctors past experiences in PCa surgeries, as well as obtain the contact of one patient with whom to talk.

I wonder why you have chosen surgery. What is your clinical stage?

Best of luck in your treatment. 

VG 

Rob.Ski
Posts: 12
Joined: Feb 2021

I just turned 50.  PSA is rising over last year 3.5-4.5  Gleason 6.   Second opinion agrees with first.

 

Concerning docs, just feel like I'm picking blindly.  The docs put forward their resume/sales pitch, which is generally makes them look great.  My original urologist was just picked off website.  When I got biopsy results, couldn't get an appt. for 2 months to discuss results so, I went to CTCA.  They got me in quickly.   I would guess the opinion from 1 patient they give as a reference would be good.  Just looking here to see if anyone has had surgery there. 

VascodaGama's picture
VascodaGama
Posts: 3320
Joined: Nov 2010

Yes, it seems to me that you are "picking blindly" and that is for sure not the best way in making decisions on therapies for prostate cancer that are linked to the prejudice of your quality of life.

In fact Gleason score 6 is the lowest aggressive that usually provides more than enough time to the patient to educate on the issue and consequences in therapies. What is taking you to such fast decision?

Young people in particular with long life expectancy may see their life style become absolute at such young age.

The PSA of 4.5 ng/ml is high but it doesn't indicate that the cancer is really aggressive. The PSA is a sensitive biomarker that easily shows variable upwards values if we had sex the night before drawing the blood sample for the test, or used a bike, etc.

You need to treat but do it coordinatly and timely.  Prostate cancer does not spread overnight. 

Best, 

VG 

 

Rob.Ski
Posts: 12
Joined: Feb 2021

Not an overnight decision, been actively monitoring for a year.  I'm aware of activities that impact PSA testing and fluctuations.  Surgery isn't imminent but, it is coming.  Trying to figure out best way to vet doctors.

Josephg
Posts: 266
Joined: Jan 2013

Rob,

As Vasco suggested, you have ample time to fully research your options for therapies regarding your PCa.  Both surgery and radiation should be available options for you to consider, and both have their positive points and their negative points.  The fact that you are here, talking with PCa survivors, is a great first step.

Like most things in life, the greatest consistent results are generally achieved by those who have the most experience.  When considering doctors to work with you, the doctor's experience is one of the most important evaluation criteria to be aware of.  With the Internet and social media, there is more available data for you to review than ever before possible.  For example, when considering a prostatectomy, I suggest that you would like to see your chosen surgeon's experience to be above 1000 prostatectomies performed, preferably over 2000.  While the number of prostatectomies performed does not automatically guarantee you a successful prostatectomy by that surrgeon, your odds are greatly improved, and feedback/reviews on that surgeon should be more readily available for you to review.

Another very important aspect of selecting a medical prosessional to lead your therapies for your PCa, is your relationship with that medical professional.  You have to feel comfortable interacting with that person, and you have to devleop a mutual trust and respect for each other.  Sometimes, personalities clash, and you do not want to have any unnecessary distractions develop, while you are undergoing treatment therapies and the resulting follow-ups.  You are placing yourself in the hands of that medical professional, and you have to be totally comfortable with the selection.

I would suggest that you have a consultation with (1) a Medical Oncologist, (2) a surgeon who performs prostatectomies, and (3) a Radiation Oncologist.  Do your research first, and then prepare in advance a full list of questions for be discussed in each of these consultations.  I suggest that you obtain a Medical Oncologist as the leader of your medical team, and this Medical Oncologist can be with you throughout your PCa journey.  The Medical Oncologist has no vested interest in either prostatectomies or radiation therapies, and will give you advice and recommendations that are case specific to you and meet your requirements,  In addition, if hormone therapy is to be used at some point in your PCa journey, your Medical Oncologist will be your primary consultant in this area.  I have had a Medical Oncologiat as my medical team leader throughout my decade-long PCa journey.

Last, I am not a medical professional, and I am only offering you lay person suggestions. The medical team that you eventiually select will provide you with professional medical advice.

I wish you the best of outcomes on your PCa journey.

Clevelandguy
Posts: 658
Joined: Jun 2015

Hi,

Good advice from Vasco & Joseph above,  my general doctor recommended a great Urologist for me.  Great doctors +great facilities = great results.  Take the time to find a doctor you feel good about and is also capable.

Dave 3+4

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3609
Joined: May 2012

Rob,

I have not really researched CTCAs, but their general reputation among people I know in the oncology community is that they are "fair."   Neither great nor horrible.   Think C-Plus or B-Minus.  Think oncology marketing and convenience; they are The Target Store of Oncology.  They are not the best for rare or complex cases, but yours is neither, based upon what you have shared.  In general, a Stage 1 or Stage 2 case of PCa is relatively easy to eradicate via radiation or surgery;  an experienced, certified surgeon or oncologist in most cases will do nicely.  He or she will not need to be a world authority, not that there is anything wrong with that, except the price tag.  A good thing is that CTCA have radiation oncologists, so speaking to one of them for a consult should be easily arranged in-house.  I have heard that because they are a network, odd results are often shared online with experts who may be at other locations, but this is hearsay.

Rob.Ski
Posts: 12
Joined: Feb 2021

Thanks for the replies.  I have spoken with a radiologist at CTCA that was recommending surgery for my case when the time comes.  I would of have thought 500 was a lot of prostatectomies so, that's good gouge.  My general practitioner was kind of among similar opinion that PCa is common, most places should be able to deal with regular cases.  Of course, reading about SE, want the best chance of avoiding those.   That is why I'm here, trying to get some opinions on CTCA.

Thx

hopeful and opt...
Posts: 2304
Joined: Apr 2009

You mention that your Gleason is a 6. Many doctors consider a Gleason 6 a non cancer. You did not indicate the number of cores that were Gleason 6 or the involvement, that is the percent of the core(s) that are cancerous.  It may very well be that you are a candidate for active surveillance and you may be able to avoid the side effects of  active treatment. Can you provide more detail about your case?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3609
Joined: May 2012

Rob, your replies indicate that you are well inform and doing all of the right stuff.   It is interesting that a Radiation Oncologist recommend that you have surgery.  He must have had some reason for suggesting such.   When DaVinci was NEW-ish, it was common wisdon that '200' surgeries established proficiency, but of course, if a surgeon is Board CERTIFIED as a urologic surgeon, and on the DaVinci machine, then they have alread done a lot of surgeries as a resident or in training under some other doctor.   Five Hundred represents significant experience.  I have heard guys mention that their surgeon had done 2,000 or more, but as DR. Peter Scardino, former Chief of Surgery at Sloan Ketterin CC in NYC writes in his "The Prostate Book":  sheer number of surgeries is not the ultimate indicator of a surgeon's quality.   This is because, he says, some surgeons have little flaws in how they proceed, and then keep those habits throughout a career.  This is true of everyone in every profession, I suppose, but is an important thing to recall.  My surgeon is a a nationwide authority on PCa treatments (Residency at MD Anderson, and now leads or participates at national associaion meetings), and he is now up to around 1,300, and had done about 800 when I had my removal.

I would say that you are moving in all of the right directions. Also, many guys agonize forever over making the 'perfect' choice.   Almost always with PCa, there are legitimate options.  You will never make the 'perfect' decision.   The best most men can do is make an informed, clinically valid choice with a doctor they trust and have confidence in, and then move on.  When you decide, be happy with it and do not look back,

Rob.Ski
Posts: 12
Joined: Feb 2021

Think surgery recommendation is coming mostly based on age.  Younger, otherwise healthy.  If surgery fails, radiation would be next option.   Surgery after radiation is much more difficult, harder to heal.  At least, that is how it was explained to me.

Rob.Ski
Posts: 12
Joined: Feb 2021

I am currently on active surveillance.  4 of 12 cores 3+3, both sides.   Evaluated by 2 pathologists.   

 

 

hopeful and opt...
Posts: 2304
Joined: Apr 2009

Of the cores that had 3+3, what was the involvement, that is what percent of each core was cancerous. Basically trying to figure out volume. 
6 cancers will not leave the capsule however when there is a lot of 6 there can be more significant cancer. 

Suggest that you have a geonomic test. There are a few decipher, prolaris, oncotype Dix. These type tests examine your tissue on a molecular level to view the aggressiveness of your cancer. 

Clevelandguy
Posts: 658
Joined: Jun 2015

Hi Rob,

You can stay on AS for many months maybe years but you have to keep an eye via biopsies on your cancer.  Gleason 3 is a milder form than say 4 or 5 but it's still cancer.  If it was not cancer it would have been rated benign.  At a 3 you have plenty of time to decide on future treatments. If it was me I would want to know if the cancer was close to the edge(possible escape) or buried deep inside the Prostate.  All cancers whether a 3 or 5 still grow just at different rates.  Good luck........

Dave 3+4

hopeful and opt...
Posts: 2304
Joined: Apr 2009

Many doctors consider a 3+3=6 a non cancer, and is different from significant cancers that contain a Gleason 4 or 5.  Unlike other cancers this cancer will not leave the prostate. Active Surveillance is the preferred treatment by all major medical institutions. Doing an active treatment such as surgery or radiation when a man meets the criteria for active surveillance is considered overtreatment, and can have major side effects that can last a life time. 

I have been enrolled in an active surveillance protocol for 12 years, and will start my 13th in march.

Rob.Ski
Posts: 12
Joined: Feb 2021

My oncotype is 26.  

 

What kind of PSA increases have you had over 12 years? 

MK1965
Posts: 215
Joined: Jun 2016

Rob,

Why do any treatment when treatment is not necessary? Why treat something that is 99+% won't do any harm to you?
Surgery will drasticaly degrade your quality of life in many ways And for many years, very often it is lifelong.

I was pretty close to your age at diagnosis and RP surgery. Per TRUS biopsy, I was 4+3 with just 10-15% of cores involved.

No one wanted to accept me into AS because 4+3. RO did not want to do radiation because of 3 month prior I had TURP where I was incidentally diagnosed with prostate cancer 3+3 in transitional zone.

i had RP 4+ years ago. After RP I was downgraded to 3+4 in multiple locations and on both sides of prostate.

My QOL after RP is severely downgraded and I never recovered a bit of sexual function. I was suffering physically and mentally, my marriage ended in problems, my wife distanced her self etc.

Even in my case, I consider RP to be over treatment. 
AGE is no guarantee for good outcome, just excellent sell pitch used bu surgeons to get your business.

Good luck with whatever you choose.

MK

hopeful and opt...
Posts: 2304
Joined: Apr 2009

Rob,

In July 2013 my slides were evaluated by oncotype DX.   The GPS was 27 ( I think that that's the score that you are referring to. What that means for me is that according to oncotype DX I am a low risk patiient, likelihood of favorable pathology 74%, freedom from high grade disease 84%, freedom from non organ confined disease 80%....Oncotype DX uses rt-pcr to determine the expression of 17 genes in tumor tissue. Oncotype is calculated from the gene expression results and ranges from 0 to 100.

The criteria for the Genomic test is based on a prospectively-designed validation study of biopsy tissue from 388 patients with localized prostate cancer meeting the NCCN Very Low, Low and Intermediate risk criteria.

It  seems that your numbers are similar to mine...is that true?

....

You ask about PSA increase.

First let me say that the main information that I am interested in are my biopsy results, not the PSA's

That said, my PSA, sometimes jumps up and down, but over time there is a gradual increase .. When I was first diagnosed around March 2009 my PSA was around 2.26/2.2.27. There has been a gradual increase over time. In February 2020 it is at 6.2 (Please note that you have to look at the trend of the PSA's since individual points fluctuate a great deal........By the way if you click my name at this site, I've documented my prostate cancer journey.

I am open to answer any questions that you might have.

Rob.Ski
Posts: 12
Joined: Feb 2021

Seems like a lot of docs are interested in PSAs.  I'm aware it runs higher in some people.  Curious what led to your biopsy with PSA being low for your age.  Mine was 3.3 at age 49, now 4.6 18 months later.   Don't have my pathology handy but, one of the cores was 50%, others were lower.   

Just got the Onocotype so, not real clear on what the data means but, it says The combination of GPS and clincal features predicts this patients risk is NCCN Favorable Intermediate.   Maybe it has to do with age difference? 

hopeful and opt...
Posts: 2304
Joined: Apr 2009

Unique situation that led to my initial biopsy. I had a digital rectal exam. A lipoma was found in the cavity, not the prostate. Two different urologist decided to do a biopsy. I did not have knowledge at that time, so I agreed. I believe now that a biopsy was not called for at that time. 
As far as the importance of PSA in my case. I have had a series of three dimensional fusion biopsies. My doc places greater importance to these versus the psa  

I don't think that the oncotype resu refer to age, but you can research to make sure  

Important to have your written records in your possession so you can bring to various specialists  

It is highly recommended to have a second opinion on the slides of your pathology by a world class pathologist  Johathon Epstein of Johns Hopkins is recognized as world class and one of the best in the world  Simply contact your docs office and have them sent  All of your treatment is based on this  If insurance doesn't cover it would be about 250

 

 

 

ASAdvocate
Posts: 153
Joined: Apr 2017

You have been told the standard talking point that, if you have primarily radiation, you then can't have surgery as a backup.

IMHO, that statement ignores the fact that failure of radiation is usually due to the cancer having already escaped the prostate, so surgery would be ineffective. Radiation is a whole gland treatment. In any event, more radiation, cryotherapy, or HIFU, FLA, or TULSA-PRO could be used for salvage treatment. SBRT/Cyberknife is being used more and more to target areas identified by scans.

Keep consulting with more specialists. I am a Gleason 6, and have been in a strict AS program since 2009, with no progression of my pathology.

 

Clevelandguy
Posts: 658
Joined: Jun 2015

Hi,

If you do choose surgery or radiation do your homework on the side effects.  Both surgery and radiation can have good results or sometimes not so good results.  Saying all surgery is bad or radiation is bad is an unfair generalized statement.  I had surgery and I am happy with the results, MK was not.  Other people on this form have had bad outcomes from radiation and others very good.  Each case is unique and to lump all surgery or all radiation as horrible is just not true.  It all depends on the amount and location of cancer in your Prostate and the facility's and doctors treating it.  Weigh the consequences and accept your choice in the future.  Don't let the naysayers shy you away from either treatment.  AS is another way to go if you choose that path, just consider what goes into AS and again learn to live with those parameters.

It's your body so you get to decide what to do, be careful of people with biased views as their wisdom is often clouded by that bias.

Dave 3+4

 

 

 

amdenver
Posts: 18
Joined: Dec 2020

Hi:

Dave's right on about doing the home work.

I'm in the situation of deciding which avenue to take. Had my meeting with the Uro about two weeks ago, in which he spent about 10 minutes on RP and how he does it, including answering some of the questions I had. Subsequently, I happened to look at his visit notes and found a LOT more there than had been covered in the actual meeting. Appears to me that this is the RP perspective that probably his internal legal has provided to him and he's copying pasting into each notes, i.e. their real view of RP and its subsequent after affects.

Rob: Hopefully there'll be additional information for you in here:

1) Radical surgery: nature of surgery discussed. If performed, radical prostatectomy was recommended via open retropubic or robotic assisted laparoscopic approach. Incisions , risks and benefits for both procedures were discussed. Hospital stay and recovery discussed. Post-operatively, patient would have a Foley catheter. Catheter would be removed 1-2 weeks after procedure. If both nerves spared, there is a 30-40% chance of post op erectile dysfunction. If one nerve spared, there is 50-70% chance of of post op erectile dysfunction. If both nerves have to be removed there is over 95-100% risk of post op erectile dysfunction. These percentages apply to 6-12 month post operatively after a period of healing. Post-operative treatments for impotence briefly discussed including PDE5 medications, vacuum pump device, penile injections, and penile prosthesis. The patient was informed of the possibility of leaving cancer behind in neurovascular bundle(s) even with good pre-operative prognostic factors. The general possibility of a positive margin (potential for residual cancer) was also discussed. Possible need for radiation therapy post operatively and delayed (10 years or more later) was discussed. The patient was informed that he is likely to have some degree of incontinence after surgery which may take up to two years to resolve. Up to 10% of patients have permanent incontinence (2 pads per day or more). The risk is less in younger patients. Treatments for post-operative incontinence (collagen injection, artificial sphincter, slings ) discussed. Patient informed that even patients with satisfactory urinary control report occasional dribbling with lifting, physical activity, or fatigue. Robotic assisted prostatectomy is another approach to removing the prostate. Other risks discussed included but not limited to positional injury, rectal/bowel injury necessitating diverting colostomy/ileostomy, ureteral injury including loss of kidney, penile shortening, lymphocele formation necessitating interventional radiology drain, permanent obturator nerve injury, prolonged foley catheter, need for interventional radiology procedures, need for prolonged drains, bladder neck contracture, incontinence, hernia formation at incision sites necessitating general surgery procedure, and all associated procedures.

Best of Luck with your options !

Old Salt
Posts: 788
Joined: Aug 2014

Thanks for posting those (somewhat imaginary) 'notes'.

Such a discussion with the patient would take at least 30 minutes!

Rob.Ski
Posts: 12
Joined: Feb 2021

Trying to do the homework just don't feel that good about it.  

Clevelandguy
Posts: 658
Joined: Jun 2015

Wow Amdenver, sounds like a TV commercial for a drug where everything under the sun is a possibility.  😳

Dave 3+4

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