56 - surgery vs seeds/ good doctor in CT?

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klains
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Date Joined Nov 2010
Total Posts : 79
   Posted 11/5/2010 1:37 PM (GMT -6)   
Trying to get as much information for my husband. He is 56 and recently diagnosed. been watching sense 2001, PSA then was 2., PSA 3.6 in 2009, 4.4 in 2010. Biopsy 10 samples , 2 postitive. Gleason score. 7 We have seen a Urologist/surgeon and a Radiologist urologist. Both do agree " based on age, surgery would be a good choose." the only thing they did not agree on was the after treatment. Urologist said because the gleason was a 7 , and opted for seeds, he would follow with external beam radiation. But the radiologist said" I do not do combined therapy" . I do have a call in for the doctor to explain the difference. ( of course though of these questions on the way home, and not in the office) Also if seeds are done can external beam radiation be done if the PSA goes back up later. We are leaning toward the surgery. But trying to get all details first. Also would like to get another opinion from another doctor. Any one know of a good one in Connecticut? That seems to be a bit of a challenge to. Any thought. very appreciative

klains
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Date Joined Nov 2010
Total Posts : 79
   Posted 11/5/2010 1:41 PM (GMT -6)   
also wondering what a reasonable time table would be to take action?. Just got this news 3 weeks ago, trying to read as much as possible to make the decission

Sephie
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Date Joined Jun 2008
Total Posts : 1804
   Posted 11/5/2010 2:03 PM (GMT -6)   
Klains, sorry that you have the need to be here but think you will find lots of information and support from some excellent folks on this forum.

My husband was diagnosed at the age of 58. Don't know where in CT you are...we're in northern Westchester county in NY and our surgeon is in Mount Kisco at Northern Westchester Hospital. Your man's PSA was less than my husband's at surgery (my husband, John, was 6.4 at diagnosis). Ten samples taken at biopsy, two were positive, and he too was a Gleason 7 (3+4). Knew he wanted surgery from the beginning and didn't even want to explore seeds or IGRT. Had his surgery in March 2008, and has done fine since then.

As far as when to take action, if surgery is indeed the way you both want to go, your husband will have to wait a bit longer before the surgery can be done. The prostate is a bit bruised and swollen from the biopsy and, if I remember right, we had to wait at least 7 weeks before the surgery could be done. John's diagnosis came on February 4 and he had surgery on March 18. Don't worry about the three weeks that have gone by since diagnosis.

If you want to "speak" privately about doctors, side effects of surgery, etc. leave a message here and we'll figure out how a way to connect "off line."

medved
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Date Joined Nov 2009
Total Posts : 1096
   Posted 11/5/2010 2:19 PM (GMT -6)   
Hello Klains. There are some confusing thoughts in your post. At least they are confusing to me. I think you need a doctor who will take some time and explain to you the options. Would it be possible for you to travel to Boston or to New York, from Connecticut? If so, you could see a doctor at Memorial Sloan Kettering Cancer Center in NY or Dana Farber in Boston. These are two extraordinarily well regarded cancer centers, with nationally regarded prostate cancer experts. I would not, for now, be thinking so much about what the "after treatment" is. You need to figure out what the first treatment is. That could be surgery. Or it could be external beam radiation (such as IMRT). Or it could be seeds. Or it could be seeds and IMRT. (And there are some other options too). A good doctor will be able to explain all this clearly. Best wishes.
Age 46.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5, 1.5
 

klains
Regular Member


Date Joined Nov 2010
Total Posts : 79
   Posted 11/5/2010 2:47 PM (GMT -6)   
HI , thanks for the posts. Stephie, Thank you , that would be great to email, but do not know how on the contacts . I am actually up near the mass line in CT ..
Medved, thank you for the info, sadly being unemployed for a year, between limits on insurance and finances our options are minimized. I did call the insurance to see if we could got out of network and the explained a very lengthy process if it gets aproved

klains
Regular Member


Date Joined Nov 2010
Total Posts : 79
   Posted 11/5/2010 2:48 PM (GMT -6)   
Also I was thinking about even getting a second opinion on the biopsy and our insurace does not even cover a pathologist

Wigs
Regular Member


Date Joined Mar 2009
Total Posts : 89
   Posted 11/9/2010 8:00 AM (GMT -6)   
klains,

My only comment is that since you are in the "mode" of investigating "after treatment" options, be sure to ask the doctor what the "after treatment" options would be if your husband chooses brachytherapy and the cancer returns. At 46, I chose brachytherapy and 10 years later the cancer returned. The option I chose, salvage prostatechtomy, was a difficult surgery with extenuating results. Had I known the extent of damage that brachytherapy does to surrounding tissues, organs, etc., I would have chosen surgery the first time around. I didn't ask my doctor that question....

Wigs
Diagnosed @ age 46 - September 1997
PSA 5 / Gleason 3+3
Seed Implant - January 1998 @ Trident Hospital, SC
PSA 2.4 - July 2007
PSA 2.7 - July 2008
PSA 3.0 - November 2008
Diagnosed @ age 57 - December 2007
Gleason 4+3
Salvage Prostatectomy & Colostomy - March 2008 @ MSKCC, NY
Suprapubic cathether installed - July 2008 @ Cleveland Clinic, OH
Urethral-Rectal Fistula Repair - August 2008 @   Cleveland Clinic, OH
PSA < .03 - Aug 2008
Penile catheter removed October 2008
Suprapubic catheter removed December 2008
Colostomy Reversal - January 2009 @ Cleveland Clinic
Urethral stricture removed - January 2009 @ Cleveland Clinic
(Total incontinence - 4 diapers & 6 - 8 pads per 24 hour period)
PSA < .03 - Jan 2009
AUS implant - May 2009 @ Cleveland Clinic
PSA < .03 - May 2009
AUS activated - July 2009
(Wearing a light pad daily.)
PSA < .03 - July 2009
Penile Implant - December 2009 @ Cleveland Clinic
PSA < .03 - December 2009
Penile Implant activated - February 2010
PSA < .01 - April 2010 
 

GTOdave
Regular Member


Date Joined Oct 2010
Total Posts : 175
   Posted 11/9/2010 8:12 AM (GMT -6)   
klains, there is a surgeon at Hartford Hospital that is a DaVinci master. I'm near Danbury, and will have my surgery in late December locally.

Up until Danbury Hospital got it's own DaVinci, many people would go up to Hartford for this doc, whose name of course, I do not know.

Do a little research and you should be able to track him down without much difficulty.
52 yr old, newly diagnosed. PSA 3.5, Gleason 6 with 3 of 4 top nodes (0%;1%;10%;1%) cancerous. Bottom 2 floors are clean.
Da Vinci surgery scheduled for 12/30/10
Hoping that the robot does not become "self-aware" (we all are old enough to get this reference)

Spartan78
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 11/9/2010 8:34 AM (GMT -6)   
Hi. While somewhat a shock, all of this is very manageable. I'm your husband's age, and was diagnosed with similar numbers earlier in the year. From all of my readings and meetings with DR's, surgery made the most sense, especially at our age. The problem with radiation is once you do that, surgery is many more times difficult. And Robotic Surgeery is the cutting edge---only 1 or 2 nights in the hospital, and very precise so the best results are high percentage.

I highly recommend you try to get to NYC and meet Dr. David Samadi, he is vice-chair of urology at Mt. Siani, and is THE expert in da Vinci Robotic Surgery---he teaches the others as they move into the area. And a very compassionate, attentive DR. He personally performs the surgery. He is a rock-star.

My 2 cents from my experience. I'm now 6 weeks out, post-surgery was all great--and my PSA came back yesterday 0.01, which is considered negligible. Hope this helps---wish you all the best!!

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 11/9/2010 1:16 PM (GMT -6)   
klains,
 
You are doing the right thing....explore all your options and learn as much as you can about the side effects of each. It any of the docs tell you that his/her patients don't have any SEs, talk to some more docs. You will learn a lot on this site. After leaning first toward surgery, I ended up going with a combination of BT and IGRT and have been very happy with the result. While this is mostly a surgery site, there are others who have had seeds and/or external beam radiation who will probably share their thoughts. In the end, it has to be what feels right for your husband. Best wishes,
 
Joe
Age 67 PSA 4.5 Biopsy 9/4/09 Bostwick Labs 5 of 8 sections (5 of 11 cores) positive-Gleason 3+3=6 Stage T1
BT on 12/11/09 (84 seeds of Palladium 103) Home same day/no catheter. Some burning, frequency, urgency for 6 weeks. No incontinence, mild ED. Normal activity within 3 days. 25 IGRT sessions ending 3/22/10 - some fatigue until 30 days after last treatment. PSA on 5/26 - 0.1 PSA on 9/1 - 0.1

klains
Regular Member


Date Joined Nov 2010
Total Posts : 79
   Posted 11/10/2010 4:52 AM (GMT -6)   
Thank you for all the post, we have a appointment with a prostate onlocologist on monday, for another opinion and thought. I talked with the radiologist the other day on the phone and he mentioned he was at a seminar this past week and spoke with other doctors and found they have alot of returning patience that have had the robotic surgery in compared to open surgery. We are leaning toward the surgery, but still many questions before that decission. Also having another pathologist read the biopsy may help.

klains
Regular Member


Date Joined Nov 2010
Total Posts : 79
   Posted 11/10/2010 4:53 AM (GMT -6)   
just not sure how much decission time we have, one doctor said , first of the year would be fine

Spartan78
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 11/10/2010 5:40 AM (GMT -6)   
There is so much info, I know it can be very confusing. The one thing with the Robotic is to make sure that you connect with a very experienced Dr who has done many of these (maybe a couple thousand or more). I think that's why the radiologist mentioned that it seemed more Robotic surgeries were coming back---some DRs simply don't have the experience. It is a highly specialized area, but is much less invasive, and I believe from readings is more precise especially in dealing with protecting the continence and ED nerves. Good luck.

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/10/2010 6:14 AM (GMT -6)   
Klains, perhaps the place to start would be to speak with your insurance company to see what hospitals are within their network and would be covered. While there are many excellent hospitals within a reasonable distance of the CT/MA border, no use speaking with them if your insurance won't cover the expenses. Sloan Kettering in NYC is excellent...probably one of the top five cancer hospitals in the world. But, they are very restrictive in terms of what insurances they accept (I know, I spoke to them and we have a very good private health insurance plan through my former employer). I was actually told by the Sloan Kettering representative I spoke with to contact Columbia Presbyterian (another excellent hospital in Manhattan) as they are more flexible in terms of insurance issues.

Question for you about your husband's Gleason score: was it 3+4 or 4+7 (I ask because there can be a difference with 7s). There are generally 3 risk categories for PCa: low risk, intermediate, and high risk. A Gleason 7 is generally considered intermediate risk. Often, the deciding factor is whether the majority of cancer cells are a Gleason 4 (which is more aggressive) or a Gleason 3 (less aggressive). I know this may be very confusing right now but, trust me, you'll learn stuff you never thought you would know as you walk with your husband through this journey.

I take it that your husband's clinical stage (that's the stage assigned at biopsy vs. the pathological stage which is assigned after prostatectomy) was a T1c (found through elevated PSA). If the doctor felt any hardness, ridges, or bulging on the prostate during the DRE (digital rectal exam), then your husband's clinical stage would likely be a T2. Technically, a T1 affords you time to make a decision and put the plans in place. After biopsy, there is a waiting period before surgery to allow the prostate to heal after the biopsy. So, if your husband was recently diagnosed (late October?), then he would have to wait about 7 or 8 weeks before the surgery. Don't know if the same restrictions apply for seeds or external beam radiation.

Hope you come back and let us know where you are in the decision-making process. We're here for you and your dear husband.

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 11/10/2010 3:03 PM (GMT -6)   
I think that the Surgeon that GTO was referring to is Dr Wagner. He is attached to Hartford Hospital and has done many DiVinci surgeries. He operated on me last year and it went very well. Also, if you go to Hartford Hospital they have several very good medical and radiation oncologists at the Harry Grey Cancer Center. Don't discount Yale. They are not up there with MSK and Dana Farber, but their reputation is growing. BTW, I am in Northeastern CT.
Dx PCa Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4) - 8 cores, 4 positive, 30% of all 4 cores.
Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%, nerves spared, no negitive side effects of surgery.
PSA's < .01, .01, .07, .28, .50. HT 5/10. IMRT 9/10.
PSA's post HT .01, < .01

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 11/10/2010 3:03 PM (GMT -6)   
I think that the Surgeon that GTO was referring to is Dr Wagner. He is attached to Hartford Hospital and has done many DiVinci surgeries. He operated on me last year and it went very well. Also, if you go to Hartford Hospital they have several very good medical and radiation oncologists at the Harry Grey Cancer Center. Don't discount Yale. They are not up there with MSK and Dana Farber, but their reputation is growing. BTW, I am in Northeastern CT.
Dx PCa Dec 2008 at 56, PSA 3.4
Biopsy: T1c, Geason 7 (3+4) - 8 cores, 4 positive, 30% of all 4 cores.
Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%, nerves spared, no negitive side effects of surgery.
PSA's < .01, .01, .07, .28, .50. HT 5/10. IMRT 9/10.
PSA's post HT .01, < .01

klains
Regular Member


Date Joined Nov 2010
Total Posts : 79
   Posted 11/13/2010 5:00 AM (GMT -6)   
Thank you so much for your posts. We do not have very good insurance and after talking to them they said if we wanted to go "outside the network" I would have to have the doctor write a letter of reason and have it approved. I will investigate that process and timing. Also will look into Dr Wagner. After speaking to the radiologist, he said he sees alot of patients after the robotic surgery than open. So I do realize the importance of finding a experienced doctor.
We have another appointment with a onocologist on Monday, for another opinion and having many questions that have come up addressed. He does have a T1c stage and of 10 samples, one at 4+3 and one at 3+4. gleason. The radiologist we spoke with also wanted to have him tested IGF-1 for .acromegaly. In came back " with a very high count" . So now we need to see a endogrinologist. Wondering if anyone has had both at the same time?

knotreel
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Date Joined Jan 2006
Total Posts : 654
   Posted 11/13/2010 7:48 AM (GMT -6)   
That is a tough choice. I had the RRP but for the added saftey factor of the surgery leaves you better options if further treatment is needed and a big plus in my mind is once the prostate is removed you get a pathology report. As far as final outcome, I don't know but I liked the idea of saving some bullets for later. In reality the idea of additional saftey is only that, an idea but it that made me feel better. One thing I didn't know about the seeds which are sometimes billed as a non-event recovery wise is that they can give you a rough time. My friend who is older had the seeds and almost imediately it made him sick. Diarrhea and trouble urinating and the half life of his seeds was something like six months and it was a tough six months until the radiation started to subside. Appartently this doesn't happen to everybody. In my mind the whole selling point of seeds is a relativly tolerable proceedure and for him it wasn't.
For me with a relatively high gleason and if I was your husbands age I personally would get the surgery or maybe the proton beam ( if available in your area). But everybody has different lifes and haveing a treatment that fits into your life is big.
Since I have already given advice where maybe I shouldn't, I will stick my neck out a little further and say that I think most of the treatments will cure the cancer.
So whatever you do will probably work and as I mentioned it may come down to what sounds the best for your life.
Good luck and once you make the choice I know you and your husband will feel better as it is very unsettling to have such a decsion thrust on you like this.
06-08 1st biopsy neg psa 4
10-09 psa 5.5 2nd biopsy 1/12 pos. 10%, G(4+3) age 65
12-15-09 RRP Tulane NOLA Dr Lee
Path, 1%, clr marg, no EPE, no SVI, nodes cl, G(4+3)
100% incontinent after 3 mo. PT
ED, pre-op severe, post op total , considering IPP
10/10 Dr Boone, Baylor recomended AUS
post op psa's 0.04,<0.1,<0.1

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 11/13/2010 7:51 AM (GMT -6)   
klains - Sorry you are here, but know that your questions and concerns are not unlike what most of us experience. You've been presented with some good ideas. Sometimes it gets confusing, because there is no perfect solution.

My father was diagnosed at age 75 and went through IMRT. Given his age, that was probably a good course of treatment. Age 56 puts your husband in the situation where he has options, but that also means the two of you have decisions to make. Hence your posting. My wife and I went through this same process. I am now two weeks post da Vinci, and feel pretty good. I also feel good about our decision. That does not mean it is right for everyone.

As has been pointed out, radiation creates scar tissue and therefore fewer options should the cancer return. At age 56, there are a lot of years ahead of your husband. Brachytherapy may be a good option, but there's the "what if" risk.

My wife and I visited with urologists, surgeons and radiologists who were all good at explaining the options. They were not very good at making our decision for us. Get all the candid information you can and then be sure to seek treatment from an experienced doctor. We wish you well.
Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive
da Vinci 10/29/10

lnwm
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 11/13/2010 5:07 PM (GMT -6)   
A lot of good input here. The decisions are tough and the information can be misleading depending on the source of your information. At 58, I had Stage T1C and Gleason 6. I had Da Vinci surgery Oct 6 in Swedish Medical in Seattle.

Some key points (some mentioned about):
1. Make sure your insurance covers your surgeon and hospital of choice. Get a listing from them of those covered and start there.
2. I choose surgery over radiation for several reasons
- Get the cancer out and get quick information through the pathology report. Radiation will take time.
- You can still end up with the side effects from radiation as with surgery (incontenance and ED)
- With surgery, you have a fall-back plan with radiation if cancer comes back. With radiation, surgery is nearly impossible. I had several surgeons tell me they did not know of anyone that would even attempt it. Radiation turns your organs to somewhat of a gooey mess and hard to work with in surgery.

3. Get and read the book by Dr Walsh "Surviving Prostate Cancer". Well written with tables to help understand risk categories.
Age 58 Gleason 6 T1C 7/12 samples with 5%-40%. No prior family history of cancer.

klains
Regular Member


Date Joined Nov 2010
Total Posts : 79
   Posted 11/14/2010 4:07 AM (GMT -6)   
Tommorow we have a appointment with a onocologist for another opinion and to answer so more questions we have. The test for acromegaly came back high, and the docotor ordered another to make sure it was acurate. I do not know if this changes our options of choise. Will ask tommorow, also want to see if we can have the biopsy re-read, ( I heard that is a good idea to do) Also about the color dopler I read about here. We are stearing toward surgery. Now to decide with Robotic or open. After speaking to the radiologist, he said in our area he had seen alot of returning patience , more so with the robotic compaired to open., He said he was not discounting robotic, but stessed the impotance of getting a skilled robotic surgeon to preform this. I will check out Dr Wagner that was suggested here. Again not sure if any the new of the acromegaly has changed our options.

Spartan78
New Member


Date Joined Sep 2010
Total Posts : 13
   Posted 11/14/2010 8:00 AM (GMT -6)   
Hi klains,

I think you are doing a fantastic job in exploring and asking as many questions as possible, and to get to the "truth" keep cross referencing these answers and asking more questions of others. You may want to consider keeping notes and such after different consultations--there is a lot of info--and our minds get focused on certain comments and we miss other info. The other thing is there is no right or wrong answer---each situation is unique in itself--and as you see the different options, you will also see what's best for your situation.

When finally making some decisions, the best advice I got from a friend was "choose the doctor that you feel most confident in his/her ability and experience". My friend actually put it more bluntly---"choose the doctor that you want there if something doesn't go exactly right, if there is a problem---who do feel has the most experience in handling it". I think this advice is outstanding, not only for the actual procedure/operation, but also in dealing with any post-op problems etc.

Look long and hard at their credentials, length of time doing these procedures, how many have they done, the hospital they are associated with, and the testimonials on their web-site. And maybe even talk to a reference. When I visited for my initial consultation, I met a guy who had the same procedure 3 months ago---it was great to see a person face-to-face and talk for a few minutes.

Just keep reminding yourself, you are in control, these are your decisions to make. And as I said, from the fantastic way you are intelligently attacking this---all will work out just fine. Take care. You are in our thoughts and prayers.

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 11/14/2010 8:38 AM (GMT -6)   
Each person's decision is a personal one based on what he thinks is best for him. In my case I had 5 weeks of EBRT and then the seed implants. There have been virtually no side effects. I don't get up at all at night to urinate. I get up in the morning and that's it, just the same as before. I have sex with my wife 2-3 times a week just like before. If you have a place like the Chicago Prostate Center where I had my treatment done I would highly recommend it. I was in and out of there in half a day. Cure rates are the same or better than surgery. For myself the thought of surgery and all of the after effects was just too much for me to handle. I'm so glad I chose the way I did. I researched what to do with books from the library, reading on the internet and talking with two guys at church, one had seeds and the other had surgery. My wife and I continue to go to the CPC support group once a month and still keep learning more every time.

I bought a surplus Geiger counter off of ebay before I had any treatments. I took it with me when I had the implants. That was fun. They had never seen anyone with their own Geiger counter come in before. I still use the Geiger counter every day and keep a log of what the readings are. My wife thinks I'm a little crazy but she puts up with me. It's fun.

Lots of good info here:
http://www.prostateimplant.com/

Post Edited (fulltlt) : 11/14/2010 5:32:40 PM (GMT-7)


klains
Regular Member


Date Joined Nov 2010
Total Posts : 79
   Posted 11/14/2010 6:16 PM (GMT -6)   
Thanks Spartan, That comment was timed so well, I have been told believe it or not ," looking into it to much" I my opinion , it is a very important decision, and as you also pointed out cross reference the answers. Such a good point. How did you go about getting to talk to a reference? Is this something that the doctor will provide. Odd question, just on unfamiliar grounds. I have done the research online and did narrow down a couple of surgeons. Would be great to speak to someone that has been through the process.
Fulltlt.. would you mind me asking your age and when you had the seeds?

fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 11/14/2010 6:29 PM (GMT -6)   
klains said...
Thanks Spartan, That comment was timed so well, I have been told believe it or not ," looking into it to much" I my opinion , it is a very important decision, and as you also pointed out cross reference the answers. Such a good point. How did you go about getting to talk to a reference? Is this something that the doctor will provide. Odd question, just on unfamiliar grounds. I have done the research online and did narrow down a couple of surgeons. Would be great to speak to someone that has been through the process.
Fulltlt.. would you mind me asking your age and when you had the seeds?


I just turned 57 in Feb. 2010. I had the palladium 103 seed implants in July 2010. I added a signature to my profile but it isn't showing up yet.

The age thing is a myth. Be sure to check it out. Do an internet search for prostate cancer myth age surgery brachytherapy.

Post Edited (fulltlt) : 11/14/2010 6:27:13 PM (GMT-7)

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