Should we get a second opnion?

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javamama
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/2/2008 9:33 PM (GMT -6)   
Hello! I am new at this so be patient with me smilewinkgrin My Dad is 55 years old and was recently diagnosed with Prostate Cancer by his urologist.  His PSA level is 17 and his Gleason Score is 10.  He had a Bone Scan done which was clear and a CT done of his abdomen and Pelvic area which was also clear.  The Urologist suggested that he have his prostate removed.  His surgery is scheduled in 3 weeks (the day after Thanksgiving) and I am growing worried that we may be making a hasty decision without seeking a second opnion.  Any thoughts????  I appreciate any feedback!! Thanks!

hawkfan75
Regular Member


Date Joined Jan 2007
Total Posts : 165
   Posted 11/2/2008 10:12 PM (GMT -6)   

Javamama

With his high PSA and advanced Gleason score, and the fact that other tests were performed (bone scans, etc.), it seems like you're getting good advice from your urologist.  Is the surgery open or robotic?  That's one thing you didn't mention.  Has the surgeon performed many of these?   Good questions to answer.  I personally don't think getting to the surgery early is a bad idea, given his scores.

One of the first things I purchased was Dr. Patrick Walsh's book, Surviving Prostate Cancer.  This is a great book that could help answer a lot of questions.  I would also spend these three weeks getting in as much shape as you can.  Also start Kegal exercises now, which will help to regain continence following surgery.  This is a scary time, but doing research and getting ready for surgery will reap benefits in the long haul.

I wish him good luck.  Keep in touch with this forum.


Age 57 at diagnosis (2006),  PSA 4.7 (up from 3.2 one year previous)
Biopsy November 8, 2006 1 of 10 cores positive 5% LEFT Side Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology Stage T3a, Gleason 3+4, positive margins and capsular penetration RIGHT Side
Post Surgery PSA:  March 5, 2007:  0.01    5 month PSA  0.08
Adjuvant therapy began June 26, 2007 with Zoladex injection
Radiation began August 23, 2007, ended October 8
First post radiation PSA, December 18, 2007:  0;  March 2008 - still 0;  July 2008 - 0; Sept. 2008 - 0;
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 11/2/2008 10:39 PM (GMT -6)   
It may well be advisable to have a second pathology reading of the biopsy by the best lab you can find in order to confirm the Gleason score. Most surgeons are reluctant to operate on a Gleason 10 so you may have an advantage in finding one who will. Did the original biopsy give the number of cores that were positive and the percentage of each core involved. This may or may not give an indication of the extent of the tumour within the gland. You have 3 weeks till surgery so use that time to gather as much understanding and knowledge as you can. My feeling would be it is always wise to obtain a second surgical opinion as well as the opinions of a radiation oncologist and a medical oncologist about the best course of treatment.
At the bottom of this chart from "yananow" you will find some members being treated for Gleason 10.
www.yananow.net/Chart-Gleason.htm#GS

and this site will give quite a good explanation of Gleason, staging etc.
www.stjohn.org/InnerPage.aspx?Pageid=1446
Stick with us here at Healingwell and don't hesitate to ask any question. There are many compassionate and knowledgeable members here at all stages and with differing treatments only too happy to help.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)

Post Edited (BillyMac) : 11/2/2008 9:54:10 PM (GMT-7)


califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 11/2/2008 10:48 PM (GMT -6)   

Welcome even though I'm sorry you have to deal with Prostate Cancer! Yes, you are at the right place. Ask away!

Yes, Be sure to ask how often the urologist/surgeon has done this surgery and what the success rate is. Does he do nerve sparing technique if the cancer is contained? And it can make a difference for the surgery whether it is robotic or open (this to can depend a little on the cancer itself.)

Besure to read a lot about it so you can make informed decisions. The more informed you are the better prepared to make decisions and the happier you will be with your choices. When you can be happy with the choices, you have no reason to look back and wish you'd known this or that.

Also, tell him to try to not get discouraged. There are many folks here that have been through many various situations so someone can steer you in the right direction. We are all here to help you out.

Bill


Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008
Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/2/2008 10:58 PM (GMT -6)   
I think a second opinion is always a good idea. But his urologist, I believe, is giving good advice. There is contraversy about a Gleason 10, PSA over 10 and surgery. The alternative is radiation and hormone therapy which he will likely do both of anyway. But there s growing belief that if the disease is not yet stage IV then surgery is a good idea. I don't want to scare you, but your fathers case is very serious. A second opinion on the biopsy is highly recommended, and the place to send them, I would recommend, is Johns Hopkins, and the pathologist to look up is Jon Epstein. It won't take a long time to send them there and have him review them. If it is truly Gleason 10, then he has the most aggresive form of the disease, and will require aggressive treatment.

Now that I probably have scared you, there is plenty of hope. In just my two years at this I know of many cases where the disease has been kept under control for many years. It is very important to become knowledgable to make the decisions on how to proceed. Surgery is an option, and planning should include what to do after surgery.

Sorry to welcome you here, but this is a great site with great people. You will get great input here, and if not for him, for you, you will find caring and compassion. Hang in there, and again welcome to HealingWell.

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

Post Edited (TC-LasVegas) : 11/3/2008 10:24:55 AM (GMT-7)


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 11/3/2008 5:02 AM (GMT -6)   
If his Gleason turns out to be 8 or more, starting with surgery (I believe!) offers the best chance of a "cure" -- this is an aggressive cancer. Certainly, seek a second opinion, but don't postpone the surgery.
Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 11/3/2008 5:41 AM (GMT -6)   

The previous suggestion of a 2nd reading of the biopsy slides to confirm where you stand is good advice.

If the gleason score is confirmed as 10, it is not probable that surgery in itself will be a cure.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/3/2008 7:38 AM (GMT -6)   

My best wishes and hopes to your father, he is only a year younger then me.  If that biopsy report is correct, it is a very serious dx.  Every case if different, but with a true gleason of 10, surgery is often not done, but his doctor knows all the specs and circumstances.

My surgery is in a little over a week and a half, and I am hoping, that post surgical pathology will show that the PC has been contained.

At his age, and with that psa and gleason, waiting to decide or waiting and watching wouldn't make any sense imo.

Keep us posted, I pray he fares well in what lies ahead.

 

David in SC


Age 56, 56 at DX
 
PSA 2007 5.8
PSA 7-2008 12.3
PSA 9-2008 14.9
Biopsy 2007 Negative
Biopsy 8-2008 Neg, some PIN, 4 "Suspicious Areas"
Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
Periunual Invasion noted
Additonal PIN noted
 
Open RP surgery scheduled for Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 11/3/2008 7:50 AM (GMT -6)   
A Gleason 10 and PSA >10 is a serious indicator, I feel your urologist is giving you advice that is sound as far as surgery, esp with the neg bone scans and CT's. I would have a review of the biopsies though, and if possible an opinion from another urologist to confirm your original direction, but would not postpone treatment as this likely an aggressive cancer. JMO, Good Luck. Stay with us, you will learn a lot here.
Randy
46 you when diagnosed, now 47
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01, 9 Month PSA 0.01
One Year PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Cialis 5 mg every night.
Success with BiMix


javamama
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/3/2008 9:36 AM (GMT -6)   
Thank you all for your input! I woke up this morning and called Georgetown University Hospital and scheduled an appoinment with a Dr. Lynch there in hopes to get his opinion as well. I did not even think of some of the questions that some of you said to ask the urolgoist so thank you. My Dad is very hesistant about going to Georgetown to see this prostate specialist because he is worried that he will be upsetting his urologist. I did not postpone his surgery. Also, the urologist never gave us a "stage" of cancer that he was in. Is this important...I am assuming so!! Can't believe I did not ask that. He also gave my Dad a shot that he said would keep the cancer from progressing but my Dad neglected to ask him what the name of the shot was. OH MY!! Please keep my Dad in your thoughts. Not only is he dealing with this but he is also in the process of a messy seperation with my mother who has mental problems as well as a prescription drug addiction. Trying to keep him positive and stress free is my main concern but it is quite difficult at the croosroads in his life. He is currently staying at my home with my husband and I and our two young children. We need prayers!!! Sorry for rambling on........
This may be helpful to some of you if you live close to the DC area:
FREE Prostate Cancer Lecture - November 12, 2008

Georgetown University Hospital offers prostate cancer patients comprehensive, innovative and effective treatment options. To learn more about the options available, join us for an educational lecture with our prostate cancer experts.

Details:
Georgetown University Hospital, Leavey Conference Center
Wednesday, November 12, 2008
6:30 - 8:00 p.m. Program/Q&A
8:00 - 8:30 p.m. Refreshments

Attendance is free, but registration is required.

Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 11/3/2008 3:37 PM (GMT 0)   

As everyone has mentioned the 10 is an aggressive cancer and getting to a treatment soon is a necessity.  Your urologist appears to be handling the situation well.  You did not mention the type of surgery being proposed.  In cases of aggressive cancer the open type is more prevalent in order for the surgeon to be able to feel the tissue surrounding the prostate for any signs of cancer.  Secondary treatment of radiation and/or hormones will most likely be recommended.  I am not sure what you expect out of a second opinion.  Most likely the best would be a lower Gleason but it would not change the treatment recommendation.  If I was your dad I would be wanting to move forward with the treatment asap.

Tamu


Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/3/2008 11:42 AM (GMT -6)   
First, again, your urologist appears on track, but...The last thing your dad should be concerned about is upsetting his urologist! I have heard of stories of a urologist being upset because a patient said he would get a second opinion ~ and that is extremely rare. But as one who has gained enough experience to do so, I will say this, if a urologist has defined cancer in his diagnosis, and he doesn't offer up other doctors to go see to get a second opinion, or will get upset if you do, then you need another urologist, and you don't want him touching your dad any further anyway. This isn't about the urologist, it's about your dad and cancer. The most important piece right now is to find the most experienced doctor you can get. If surgery is the next step he will take, who does the surgery DOES matter. You want a very experienced surgeon. If you are in range of Georgetown, you are also in range of Johns Hopkins. Look up Alan Partin... Great, great surgeon and specialist in the prostate cancer field and his pathologist is Jon Epstein who is regarded as one of the best in the country. While I live in Las Vegas, I seriously considered going to Baltimore because they are world reknowned for prostate cancer. Luckily, so is where I did go and it was much closer to me.

Again, hang in there and stay positive.

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 11/3/2008 12:21 PM (GMT -6)   
My feeling would be it is always wise to obtain a second surgical opinion as well as the opinions of a radiation oncologist and a medical oncologist about the best course of treatment.
Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
27cc
Brachytheraply volume study 11/14/08; brachytherapy to be scheduled in early December


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4157
   Posted 11/3/2008 12:21 PM (GMT -6)   
My feeling would be it is always wise to obtain a second surgical opinion as well as the opinions of a radiation oncologist and a medical oncologist about the best course of treatment.
Age 62
Gleason 4 +3 = 7
T1C
PSA 4.2
27cc
Brachytheraply volume study 11/14/08; brachytherapy to be scheduled in early December


javamama
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/3/2008 1:30 PM (GMT -6)   
Also, has anyone done the Cyber Knife? I did try John Hopkins but they did not have anything available that worked out before the 28th when his surgery is scheduled. Sending you all positive wishes for peace and well being! Your feedback has been sooooo helpful.

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/3/2008 6:41 PM (GMT -6)   
Get the second opinion but please do not postpone the surgery. Read and research all you can. This is an aggressive cancer you are dealing with, however since it does not appear to have spread the outcome can still be good. Please stay in touch with us, there are many members here that can give you good suggestions.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
cancer in 4 of 6 cores
92%
80%
37%
28%
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 11/3/2008 10:12 PM (GMT -6)   
My Dr. was very open to a second opinion or even me traveling for surgery. He said it was all about me doing what I wanted and not his Ego!
If you want a second opinion then go for one. You do what you need to do.
Good Luck with your decision and treatment.
KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey
     


javamama
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/3/2008 10:34 PM (GMT -6)   
The urologist did tell us that only 1 to 2% of men have a problem with incontinence or impotence after a RRP. He also said that the catheter should only have to be in for 10 days after surgery. For what I am gathering most of you that had surgery did have problems with incontinence. This is a HUGE concern (as I am sure you all can understand) for my Dad and we felt reassured that it wasn't much to worry about. Not that it will change our minds but I want to go into this with realistic expectations., In saying that, should my Dad be prepared for ongoing problems with these issues after surgery? Guess the second opinion is a good decision :). We will be going on the 20th to Georgetown and I think I finally have him convinced that it is the right thing to do if nothing else then to relieve an uncertainties that we may have. Again, we are not postponing the surgery...just making sure we are exploring options. I have been having him read your feedbacks and they seem to be reassuring him....thanks so much.....maybe I can get him to join in soon :).

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 11/4/2008 2:37 AM (GMT -6)   
I think the true figure for some degree of incontinence immediately after surgery is more like 30-40%. Many of those clear up over a period of months to a year to leave perhaps 2% with permanent incontinence. Even that can be treated with a sling or artificial sphincter. Yuk, more surgery cry

Impotence (ED) is not nearly so hopeful. More like 80% have some degree of ED immediately after surgery. Again this clears slowly over a period of months to two years or so. But there is a significant percentage (30%?, I'm guessing) who never regain full function.

In your Dad's case, with an aggressive cancer, your surgeon may recommend removing a wide margin along with the prostate. This means that his erectile nerves would not be saved resulting in certain impotence after surgery, with a less than 5% chance of natural function ever returning.

Pre-op, I had a Gleason 9, so had a wide margin removed. However even though I now have no natural function, injections work well for me, so things in that department are just as good, if not better than before. The pump (VED) also works with the non-nerve-spared -- but I find it not as good as injections. As a last resort there are penile implants available, which from all accounts are highly effective.

So, although I think your uro is being very optimistic with his 1 to 2%, longer term, your Dad need not feel gloomy. The important thing is to first get rid of the cancer, then tackle the other issues, which can be resolved one way or another. In the short term, your Dad should plan on being both incontinent and impotent -- that way he will not be disappointed.


Age 63. Other than cancer, in good health; BMI 20
Pre-op: No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores
7 March 2008, RRP, non nerve sparing
Two nights in hospital; catheter and staples out after 7 days
Continent, no pads needed from the get-go
Post Op: Stage pT2 M- N-; clear margins and lymph nodes; Gleason 4+4=8; prostate weight: 37gm
6-week and 7-month PSAs: 0
Bimix injections working well 


javamama
New Member


Date Joined Nov 2008
Total Posts : 5
   Posted 11/4/2008 7:49 AM (GMT -6)   
Piano Thank you for your frankness
 

RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 11/4/2008 5:00 PM (GMT -6)   
I will simply add that I went to three different good doctors when I was first diagnosed. I did not tell the other doctors I was going, I carried my biopsy and other info with me. The more advice you can receive the better off you are, and the better for your own mental state.

You do have a serious biopsy assuming it is completely accurate. However, you won't know the more exact condition until the pathology after surgery. There are many marvelous things going on to heal and prolong life. It is good you caught it and are dealing with it quickly, and there is still plenty of room for hope going forward.

RB

Age 61
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.01 10/30/08

califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 11/4/2008 11:04 PM (GMT -6)   

Javamama,

I had radical robotic prostatectomy in July. I did not have problems with incontinence or erections. I know my diagnosis was not as severe, but things went very well. I wore male pads for a few weeks, then used some of my wifes panti liners for a week or so.

I think many people who do post on here are the ones with problems. So keep that in mind that you might be reading a bit more negative than positive comments.

I am extremely happy with the outcome of surgery.

Glad you are getting all the info so you are prepared.

Keep asking! We are here to help! If you dad has any questions he is scared to have posted, feel free to email me. Just click on the envelope to the left of the posting.

 


Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008
Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01

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