Still trying to decide

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Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 6/2/2010 1:06 PM (GMT -6)   
My uro also wants to schedule surgery. I want a second opinion. He admitted that when I get my second opinion from a uro who doesn't do surgery the second guy will recommend his specialty.
I got a go ahead from my neurologist (stroke + seizures) and a clean bill of health from my cardiologist to undergo surgery.
I'm looking into Proton therapy and my doctor neighbor is hooking me up with a urologist friend of his so i can get another opinion.
Right now surgery fits our current lifestyle much better than proton therapy where I'll have to spend 6-8 weeks living Mon night through Thur night away from home (325 miles).
With hurricane season upon us I'd hate to be away from home when one hit. We have no family here in Florida so it would be tough on my wife.
Our last meeting with our uro he agreed with us that there is no need to rush into anything.

All of this is so confusing it's like having to pick door 1 or 2 or 3.
Age 68 on 4/30/2010
weight 185
height 6'
Samples taken 4/19/2010
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%

PSA 3.5 Mar 19
PSA 2.5 Apr 4

Bone scan clean
CT scan clean


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 6/2/2010 1:14 PM (GMT -6)   
Hi Ger,

The very best possible advice anyone can give you if you go the route of surgery is to find a very experienced surgeon. There is a statistically significant difference in surgical outcomes that directly correlates to the experience curve of the practitioner, as documented in numerous medical journals. Start asking around, and people will come out of the woodwork with information and experiences and recommendations. You will undoubtedly be able to find someone very experienced in your area if you live in or near a major metropolitan area, although some men travel for miles to find the most experienced surgeon.

best wishes...

142
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Date Joined Jan 2010
Total Posts : 7082
   Posted 6/2/2010 2:52 PM (GMT -6)   
Ger,
When you look at the radiation schedule, be sure to carefully compare the 6-8 weeks with the long term incontinence and ED prospects of radical surgery/DaVinci. Knowing what I know now, if it had been earlier, I would have gone the seeds route. Of course being too late to have a real choice, being in the 2% club doesn't help (doc will tell you 98% get continence back fairly quickly - try to get that in writing!)

Still being on pads after 30+ weeks, I belong to the 2% that didn't.

Make the doctors talk about that - they will gloss it over given a chance.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 6/2/2010 2:53 PM (GMT -6)   

Hello Ger:

I didn't see you mention brachytherapy/radiation as an option.  Even if you finally opt for surgery you probably owe it to yourself to review all of the options so you can make an educated decision.  That means talking to a radiation oncologist in addition to surgeons.  Several of us on this forum have had very good experiences with brachy...you can read my journey via the link in my signature.

I did not realize you live in Florida.  One of the finest practioners of brachytherapy is the Dattoli Cancer Center in Sarasota.  Here is a link to their web site for your consideration.

http://www.dattoli.com/

Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 6/2/2010 3:15 PM (GMT -6)   
Hi Ger42....WELCOME ABOARD! first off your numbers look pretty good no matter which way you decide to go. 142 sums it up in that which procedure is the best depends on which method your doctor has the most experience with. How about prostate gland size??? The larger, I was told, complicates some of the options. Your recovery and any complications (if any) will be highly influenced by who does whatever method you opt for!

74 years old - 2 of 12 cores (biopsy) cancerous @ 30% and 70% - Gleason 3+4=7. Henry Ford DiVinci 2/10/2010 - Cancer contained and margins clear. Five week PSA undetectable - today zero pads. (I would do it the same way even with 20 / 20 hindsight).

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 6/2/2010 4:28 PM (GMT -6)   
Ger,
With your stats, a Gleason 6, if confirmed by an expert pathologist, will respond equally to any treatment option with cure rates being exactly the same. Given those facts you should choose the treatment that has the least side affects and is the most convenient for you current lifestyle. As Tud mentioned Brachy is a fairly simple 1/2 day procedure with fairly benign side affects compared to other options. All the studies I have reviewed indicate that Proton has no advantage as to efficiency or side affects when compared to standart IMRT.
JohnT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology 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. G7, 4+3, approx 16mmX18mm.

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. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 6/3/2010 9:19 AM (GMT -6)   
Ger, I certainly am not "selling" the Brachytherapy procedure as I'm just a new comer here but exactly one week ago today, I had Brachytherapy. After a LOT of research on the computer and reading about all the possible nasty side effects of regular surgeries, I went for the seeds. As I said, had it one week ago today, just took it real easy on the following day, Thursday and drove from the Chicago area to the southern part of Colorado on the following day, Friday. I am having no complications other than peeing just a little blood (tiny amount) on the second and third day but nothing else. Next follow up will be for a blood test/PSA in three months. You really should do a huge amount of research prior to making your final decision. Of course, a PCA patients age will have a lot to do with the decision of which procedure may work the best for them. IMHO
Bob, down in Southern Colorado


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/3/2010 9:25 AM (GMT -6)   
Bob: good luck on the success of your "seeding". Sounds like the procedure went text book perfect for you. I hope your future PSA readings are all good for you.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


erbob
Regular Member


Date Joined Jan 2010
Total Posts : 281
   Posted 6/3/2010 5:20 PM (GMT -6)   
Many thanks for the kind thoughts David, I just wish your side effects were as negligible as mine are. Now if I could just get rid of the blasted side effects of the Lupron but at least that stuff did help shrink my prostate to a very acceptable/working size for the seeding. Wonder what the AVERAGE time is for Lupron to really wear off for the AVERAGE guy getting the one time 3/4 month injection. Of course everyone is different but it'd be nice to know how much longer these hot flashes can be expected to be appearing. The Brachytherapy procedure implanted 80 of the I-125 pellets/seeds with an activity per seed of (mCi) 0.373 and total activity implanted (mCi) 29.80 I hope those figures will provide what I need to kill the C stuff. I just made an appointment for blood test/PSA with my VA Doctor for August 27 so it's going to be a long three months waiting for that PSA figure.

I apologize for this hijacking of Ger's thread.
Bob, down in Southern Colorado

Post Edited (erbob) : 6/3/2010 4:27:19 PM (GMT-6)


Meryle
New Member


Date Joined Jun 2010
Total Posts : 9
   Posted 6/4/2010 4:21 PM (GMT -6)   
Ger42,  "Still Trying to Decide"  I understand completely, I'm there now too.
 
Age: 50 in good health other than PC
weight 170
height 5' 10''
No symptoms to speak of
PSA 10.4
Prostate no enlarged
 
Samples taken mid-April
6 out of 12 samples cancer
1) gleason score 3+4 involving 30% Right Base
2) gleason score 3+4 involving 40% Right _
3) gleason score 4+4 involving 50% Right Apex
Bone scan clean except a 1 mm spot on left scapula 
CT scan clean
 
Biopcy of Scapula was negative, Doctor says good/bad news, we want to watch it.
 
My urologist gave me the following options (not in any order): Study up and let us know which way you want to procees.
1) Surgery/external beam radiation (IMRB)
2) Hormone Therapy, Brachytherapy, IMRB 
 
Met with a radiologist and a robotic surgeon, each has their own path but I have not found any statistics to "know" the "Best" path for my situation, appers to be very subjective.    I did get a recommendation for surgery from a Doctor that I was e-mailing concerning a new Laser process and another from a taped 2008 Symposium I found online.  I just got off the phone with my urologist who said at my age, surgery is a good option with added external beam radiation.   The waiting list is long so I am now scheduled for July 16.   We have what appears to be a good facility here in Loveland, Colorado with experienced sergeons, still not 100% on my decision but typing through this is helping, ...... It must be raining in here, ... my glasses are a bit fogged!  Still hard to talk about/type about...
My wife of 30 years is "melting down" inside  and avoiding walking about it, we'll be working on that.  
I just found this forum , a lot hear to read for sure -
 
Thanks
Meryle 

RobnTexas
Regular Member


Date Joined Apr 2010
Total Posts : 24
   Posted 6/4/2010 4:29 PM (GMT -6)   
Welcome Meryle.

You have found a forum with a lot of caring and experienced individuals. I am thankful that I stumbled in here recently.

Rob
Age: 49, Height 5'11, Weight 190
Problem with urgency and frequency
No family history of C
Biopsy: 4/10 - 4 of 12 Positive 2@ 30% 2 @ 60%, Gleason 3+3=6, T2A
RRP: 5/18
PostOp: Gleason 3+4=7, 45g, 2cm tumor
6/1 - Catheter out YES!!!!


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 6/4/2010 4:45 PM (GMT -6)   

Take your time!

Armed with a good medical dictionary (book format or online), go directly to the medical literature via PubMed if at all possible.  Look for prospective, randomized studies or as close to it as you can find.

Given our current state of knowledge, there are no clear or correct answers.

Zen9


JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 6/4/2010 5:27 PM (GMT -6)   
Ger,
 
Was in your shoes last fall and we are about the same age. I also live in Florida. After spending a lot of time doing research and reading a lot of stories on this site, I opted for the seeds followed by 25 IGRT sessions (may not have needed the IGRT but I wanted some extra "insurance"). Came down to quality of life issues for me....I am very happy with my decision.
 
That said, a lot of guys do fine with surgery and eventually get over the side effects. Regardless of the treatment you choose, the quality and experience of the specialist is paramount.  
 
If you want to talk more about BT, feel free to email me. Best wishes on your journey.
 
Joe

Age -67 PSA - 4.5

Biopsy  (9/4/09) - Positive in 5 of 8 cores. In those 5 cores, 5 of 11 samples were positive. Gleason 3+3=6. Stage – T1C  Ct and Bone scans negative.

 

BT performed on 12/11/09. 84 seeds of Palladium 103. Surgery at 7:30 - Home at 12:30 same day with no catheter. Blood in urine for a week. Side effects as expected -  some burning, frequency, urgency.   Resumed daily  1 ½ mile walk after 3 days. 

 

BT followed with 25 IGRT treatments beginning Feb 15 (4500 Gy's). After third week, experienced some fatigue. Now 2 months from last rad treatment - energy level has returned. Burning gone and urgency is much improved.

 

First post treatment PSA (6/1/10) - 0.1

 


Hope and Prayer
Regular Member


Date Joined May 2010
Total Posts : 59
   Posted 6/4/2010 11:58 PM (GMT -6)   
I am also a new to HW and only speaking from experience from research I did when my father was dx 10 years ago and now with my BF. My father had a gleason 6 and seeds worked for him at 59. He has maintained a 0 PSA and no side effects for last 10 years. Being his daughter, it was hard to talk about ED and incontinence along the way but after BF was diagnosed, he talks more about it. He does not have side effects now but did have some blood in urine, had discomfort and was irritable. BF's situation is much worse, so he had to do surgery, HT and radiation. He has ED that is very depressing for him and rightfully so. We are only 6 months out so we are hoping for the best. There are many men here that had surgery and do not have the complications we had because of the severity of PC spreading. Thankfully, you are able to consider various treatments! There is so much information out there and many treatments available. Second and third opinions are the way to go! Every doctor will sell their speciality and its up to us to make the decision that is right for us at the time we need to make it. I wish you the best and know you will have a good outcome!
Boyfriend dx at age 44 with Stage 4 PC on 11/09. Gleason 4+5, 11 of 12 cores +; PSA 51.34
DaVinci surgery on 12/09

Gleason 4+5 confirmed. Lymph and vesicle invasion, right nerves spared.
pT3c N1 Mx
HT: Casedox and Lupron started 1/10

PSA 1/13/10 23.15 2/8/10 .37 3/18/10 <.05 5/14/10 <.02

Bone metastasis

Radiation: 42 sessions ending 6/10


plaggie
New Member


Date Joined Feb 2010
Total Posts : 1
   Posted 6/6/2010 7:23 AM (GMT -6)   
Hi Ger42
 
I was diagnosed September 2009, took the radical prostatectomy route on January 5th, 2010, I'm 45 years old and I'd say I'm 99% recovered.
Of course the surgery has it's ups and downs, but I was given other options and decided on the surgery. I'm cancer free, and my PSA is a none issue.
 
ED is a none issue now for I'm at about 90% there (no longer need Levitra) and incontinence was pretty much a none issue by early April 09
 
Gleason 6 confirmed. Lymph and vesicle invasion, both nerves spared
 
BTW, it helps when your wife is on board and supportive, without her understanding recovery would've been much slower.  
 

45 years old . Last PSA- prior to surgery was 7.4

2nd Biopsy on 09/04/09. 3 out of 12 cores positive. Gleason score 3+4

Surgery with Dr. Oake General Hospital Ottawa, Canada. 

Radical Prostatectomy performed (Jan 2010) Spared nerves as well.

Incontinence: 93% continent (at this time) — no issues overnight..

ED:  90% post surgery and improving.

Next Event: First post-op PSA on 2/25/10


Ger42
Regular Member


Date Joined Apr 2010
Total Posts : 189
   Posted 6/6/2010 11:23 AM (GMT -6)   
I have a consolation June 16th with the urologist my Dr neighbor recommended. He has been doing DaVinci surgery since 2003. He recommended seeds for my neighbor's grandfather. Neighbor says he will give me an unbiassed opinion. If I opt for surgery I might use him he has had more experience than my current doctor.
AS for my wife I could not have a better women at my side. She has been supportive since day 1. She is wiling to come to any appointment I ask her to attend.
Age 68 on 4/30/2010
weight 185
height 6'
Samples taken 4/19/2010
3 out of 12 samples cancer
1) gleason score 3+3 involving 65%
2) gleason score 3+3 involving 65%
3) gleason score 3+3 involving 10%

PSA 3.5 Mar 19
PSA 2.5 Apr 4

Bone scan clean
CT scan clean


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 6/6/2010 3:55 PM (GMT -6)   
It is always good to have a second set of ears at the discussions with the doctors, and you will want to take notes. I didn't have anyone to go with me, so I took along a recorder to all the consultations. The doctors had no objections.

Listening to them again, I was able to get a better list of things that needed to be revisited, as my comprehension was a bit clouded by the stress of the situation.

Arno
Regular Member


Date Joined Apr 2010
Total Posts : 54
   Posted 6/7/2010 1:02 PM (GMT -6)   
I have an acquaintance who has the same urologist as I do, and he is under AS. His PSA was as high as 9 three years ago and has now increased to 12. Still no problems.
I should add that he is already 74 years old.
March'06: PSA 3.6
Diagnosed at age 63 Sep'09: PSA 575, GS 7 (4+3)
3 positive cores in 6
Bone scan: as a fully lit christmas tree
With Zoladex+150mg Casodex PSA <0.1
Additionally 4-weekly Zometa (zoledronin acid)

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