Other comments from the Radiation Oncologist I met with

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Purgatory
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Date Joined Oct 2008
Total Posts : 25380
   Posted 8/14/2009 6:14 PM (GMT -6)   
The doctor allowed me to ask whatever questions I wanted, so I took advantage and want to share with you guys.  He has 30 years experience, and I am not saying I agree or disagree with him on any one point.  I told him I would post this here tonight:
 
Seeding:  they do a lot of it, said it works best with gleason 6, they will do it with gleason7, but only if taking along with external beam radiation.  he said if it fails, that the freezing method (cybo?) has best results as a salvage.
 
HIFU - he said it positively will be approved in the US eventually, but feels its has a lot of potential dangers to it, has a collegue in Canada that had a failry young patient die from it, detroyed his kidneys, his bladder, and gave him the marsa infection.  he also said that the hifu people really aggerate their success and claims about side effects.  he said that anyone that goes out of the country to have it done, is taking their life in their own hands.  he showed me a study on his computer, based on 100 people that had hifu in europe with gleason 6 cases, cherry picked, and in 10 years, the sucess rate was 63%.
 
Gleason 7:  something we talk about here a lot.  he agree they are dangerous, and if you are young when you get your dx, that surgery is the best option available as a primary treatment.
 
about the bias between radiation doctors like him and surgeons like my other doctor, he said its mostly a myth in the patients mind.  he said they swap information and cases all the time, he said in my area, they compare notes and try to find the best solution for the patient, though ultimately, its the patient that makes the choice in the end.
 
He is totally opposed to salvage surgery, he said it was brutal at best, that in his 30 years of practice, he only knew of one case that it worked.
 
Surgery:  he said what we all say to our new friends, its all about the experience factor, not the method, he said robotic and open were equal in his mind.
 
If I can remember more,  I will add it on later, brain fried and I am remembering all this in my head.
 
David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 8/14/2009 6:54 PM (GMT -6)   
Greetings, David.  Thanks for the additinal information.  Since you talked awhile with this doc, did he have any nuggest of information about incontinence or ED issues that a lot of our guys tend to face?  Just curious.  David

Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


Cajun Jeff
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Date Joined Mar 2009
Total Posts : 4106
   Posted 8/14/2009 6:57 PM (GMT -6)   
David: This is a GREAT Post.... I am not surprised by his statements.

Jeff T
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/14/2009 7:26 PM (GMT -6)   

Just for laughs and giggles, remember this is one doctors opinion. Does not matter whom he is or the whos doc, we can be shown others with some varing of opinion(s). Generalized probably pretty good assessment on PCa.  It is called practicing medicine for reasonable reasons. The HIFU sounds like plenty of practicing based upon what you mentioned.

Good luck to you Purg, as you might have noticed my original thoughts about second opinions and docs and information, might be more valid than you first thought back in 2008(no axe to grind...it is sharp...looking to help others see thru this jungle a little more by those posts).

 


mikey1955
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Date Joined Dec 2008
Total Posts : 673
   Posted 8/14/2009 7:36 PM (GMT -6)   
Hi David. Thanks for the good post.

HIFU in Canada is less than a 2 hour drive for me from where I live. I considered it, but not for long. My biopsy content was fairly high and I had numerous bouts of prostatitis. I wanted to know exactly the extent of cancer I had (post-op pathology) so surgery was my final decision. I know some guys are all for HIFU and certainly the procedure appears less invasive. It wasn't my choice considering my stats. I also wasn't comfortable with the fact it wasn't done in a hospital OR, but, that's just me. I believe I had very good results from the open RP I had here in Canada. One of the primary factors was the surgeons reputation and experience...and the track record of the procedure itself.

I also looked at HIFU in Europe.

Mike
-Hernia, mesh and large scar, surgery early 2006
-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Bone scan Dec 08: Negative
-Barium enema X-ray March 09: Small diverticulosis
-MRI with endorectal coil (April 09 as part of a study)
-3D advanced TRUS (April 09 as part of a study)
-CT (April 09 as part of a study)
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/14/2009 7:53 PM (GMT -6)   
david cpa - on that visit didnt really get to address any of that, but will on the next visit. when i told him that i never had any ed on a one nerve spared open operation, it said what they all have said, that its a miracle and makes no medical sense

mikey - glad you didnt go the hifu route, with your case and numbers, i back you up that you made the right decision for you.

zufas - i am never afraid of 2nd opinions and never afraid of the truth, may peace be with you

jeff, thanks as usual
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/14/2009 10:46 PM (GMT -6)   
Interesting report on HIFU David.

As you know, if I'd not have been told I might be a 7 that's the route I'd have likely gone.

The 63% is far lower than the reports I was looking at --- as we've discussed here it's just not been around long enough to have a history. I suppose you could take 100 people and come up looking like roses and another 100 and come up like a skunk. It's also interesting that with all the bad news he had that he says it will be approved in the U.S. If there is anything to this death (from what I know of HIFU it's hard to imagine an operator so unskilled to have this happen --- something like a daVinci going amok two, three inches from where it was supposed to be working) The next time you see him could you get some more info on this death? I'd love to see any documentation on it. I have a friend, about 40, who is just going for a biopsy who will likely consider HIFU so I'm keen to learn more.

As for exagerating the results, I'm sure that happens lots. My urologist friend at Mayo told me the results claimed by a lot of daVinci surgeons were very suspect. Another daVinci surgeon said he'd just been at a uro meeting in Florida and the claims being made by daVinci surgeons for ED he said 'no way.' He said in the age group they were operating on way way more men would be going into daVinci with ED problems than these guys were claiming coming out. He said he was darn sure of two things. First, surgery didn't make ED better and two, it was likely to make things worse in most every case, at least for awhile.
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/15/2009 6:36 AM (GMT -6)   
Sleepless,

I like your comments on the robotic issues. I think in the large urban areas, there is so much competition between centers, that they toot their horns too much. My new doctor said the same thing, that they grossly gloss over the real life ED and incontinence issues with robotic surgery. Can they go wrong, yep, we had a guy here from my own state earlier in the year, doesn't openly post any more, and they failed to remove as much as 40% of his prostate, and then covered up the blotched operation. He was in the midst of a lengthy litigation, and he was a bitter man, understandly.

The new doctor also commented on the HIFU, that approved or not one day, their practice, and they are part of a major cancer group nationwide, would never use it. That should say something right there.

david in sc
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 8/15/2009 9:40 AM (GMT -6)   

David,

Your doctor sounds very resonable; but it's no wonder that newly diagnosed patients are confused with all the conflicting information out there.

Some Docs says open is better than robotic, others say radiation is better than surgery of any kind, many patients swear by Proton Radiation and others by HUIF.

Some noted doctors won't operate on Gleason 8s and others say it's the only way to treate a G8.

It's a jungle out there and for the average Joe real confusing in a time when he is already stressed.

JT


64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DX BPH and continue to get biopsies yearly. Positive Biopsy in 10-08, 2 cores of 25, G6 less than 5%. Scheduled Surgery as recommended.

2nd Opinion from Dr Sholtz, an Oncologist said DX wrong, path shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G 4+3 approx 2.5cm diameter.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and burining urination. Daily activities resumed day after implants.

Scheduled for 5 weeks IMRT in July

JohnT


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/15/2009 1:01 PM (GMT -6)   
This post is very consistent with the opinions of my surgeon, radiologist, and my oncologist. When I spoke with my radiologist about HIFU in July he said it could be fine for those who don't like watchful waiting and want to do something, same with cryo. He said no doctor in the US should be luring cash paying patients to other countries for this treatment. It will be legal here in time and the ethics of this practice is suspect at best. He said he has recommended patients to go see a surgeon an many occasions. My surgeon has recommended patients to go see a radiologist on many occasions as well. The reasons vary depending on each case.

My surgeon seems to believe that there can be a benefit to salvage surgery, but he would not do it. the difficulty is at the high end of surgeries, but debulking a tumor can relieve pain and issues with urinary function. Not so much for life extention.

Tony


 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/15/2009 2:36 PM (GMT -6)   
Thanks for the post, David.

The information from the Radiation Oncologist seems very consistent compared to the many articles I've read.

Surgery for the young as first choice with all things equal (they never are - lol) and careful consideration of the various radiotherapy techniques.

My surgeon set up an appointment with a doctor in the radiotherapy department the same day I was diagnosed so I could get a balanced opinion. I may be lucky, but I found that the four doctors I talked to during the phase of choosing a treatment did not push me in one way or the other. The choice of therapy was totally up to me.

Kind regards,

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/15/2009 4:00 PM (GMT -6)   
johnt - i agree with your sentiments exactly, with that jungle out there, we still have to make tough decisions which most of us arent even vaugely qualified to make, let along the conflicting information from doctors and research

tony - i agree with your remarks on the HIFU ethics

barry, thanks as usual

ohio - good point there
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/15/2009 8:01 PM (GMT -6)   
I will allow Stephen B. Strum his opinion, but I would also reserve the right to heartily disagree with him.

There may be some doctors out there who have developed a routine treatment for PC, but every doctor I have encountered at Cleveland Clinic, University of Michigan, and my local URO have been as far from this generalization as possible. We have discussed every possibloe approach, its merits, and disadvantages, and have jointly arrived at the best solution for me, regardless of whether I was their fa,mily or not. My local Uro called me at home at 9:00 at night to tell me of the biopsy results/

It is my opinion that the majority of doctors out there are trying to do what is best. The problem is, what is best isn't always that obvious from a finger up the butt, a 12 stick biopsy, and some x-rays. Neither is it the same for every patient. This forum is filled with men who have had multioke approaches to similar diagnosis with equal results, both good and bad.

I really think we do a disservice to these men and women who are out there saving lives.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/16/2009 7:22 AM (GMT -6)   
goodlife, I agree with your sentiments. in my area, with my local network of doctors and healthcare providers, its been a very thorough and caring environment. I have never felt like a number or an afterthought, or the "lets just try this and see what happens" attitude.

My GP, my urologist/surgeon, and now my new radiation oncologist, all spend as much time as I need to really listen to what I am feeling and thinking. It's more like a group effort. I know that I am not as smart as a doctor, and they know they cant force me to do anything just because they say so.

Even my upcoming Tuesday corrective surgery was a mutal decision that this might be the best shot to cure these endless bladder neck blockages.

And all 3 of this group of doctors converse between themselves at different times concerning my case.

It helps to in devloping a good doctor/patient relationship if you keep it professional, light hearted when appropriate, and when you do agree on a game plan, be a compliant patient and don't try to circumnavigate the plan you agreed upon.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 

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