Just Diagnosed, what do I do?

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Devasted1
Regular Member


Date Joined Feb 2011
Total Posts : 494
   Posted 2/25/2011 10:33 PM (GMT -6)   
I am 51 and just diagnosed with aggressive PCa. PSA was 5.5 last month, after biopsy it went to 13 in under a month. Gleason score is 8 on both the left and the right side. Met with a surgeon that is suggesting a radical prostatectomy with a wide cut of the left side, nerve sparing on the right with a retropubic cut and most likely radiation after surgery. Also suggested participating in a study called Provenge. Met with a radiologist oncologist who is suggesting beam radiation, hormone therapy for four months and then have radioactive threads inserted into the prostate.

There are pros and cons of both and they both sound like they have a similar outcome except maybe with the radiation, incontinence isn't so bad.

My world has been turned upside down as you all have experienced. I need your input as to what you would recommend. I really appreciate the valuable information I have received reading many of the threads on this website and look forward to your valuable insight, experience and recommendations. Thank you in advance.

leeanglo
Regular Member


Date Joined Dec 2010
Total Posts : 191
   Posted 2/26/2011 3:18 AM (GMT -6)   

Sorry to here of your plight....if it were me i would have my prostate removed so long as the cancer as not left the prostate capsule.If it has spread anywhere else you will have to look at other options.I truly hope your cancer is contained and i wish you the very best of luck.

P.s this is just my opinion but all decisions are yours,i am not medically qualified in any way....GOOD LUCK !!


pattersson
Regular Member


Date Joined Apr 2010
Total Posts : 97
   Posted 2/26/2011 3:41 AM (GMT -6)   
Devastated1

Sorry to hear about your diagnosis. Plenty of guys here have gone through the same as you, so I think you'll get a lot of helpful comments.

It is a good strategy to talk to a number of specialists about treatment options, like you have done. You may also want to do some reading, for example the book by Patrick Walsh about surviving prostate cancer is a good starting point. If you take the surgery route, you should also find out about the surgeon. Experienced surgeons generally do a much better job.
Radical prostactemy 10/2006 @42, PSA 3.9, Gleason 3+4
PSA <0.2 2006-2009

PSA 0.14 01/2010
0.07 05/2010
0.06 10/2010

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 2/26/2011 4:04 AM (GMT -6)   
Welcome to the forum, (Sorry you find yourself here too)

The immediate thing you need to do it nothing. That sounds like a crazy notion, but what I really mean is that you need to take a deep breath and realise that even with Gleason 8 you can take a while to work out what to do next.
Provenge is meant to be the big hope so that could be a good option, but you'll have to ask a lot of questions about that.
Combination of surgery and RT can sort out a lot.

(Oh and by the way, having a jump in PSA level soon after a biopsy has more to do with the effect of the biopsy on the prostate than the cancer. My second uro completely ignored the PSA test my first uro did soon after he'd done a biopsy)

Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr CT
66Gy 28 Apr to 11 Jun 10
Tired + weird BMs
14 Sep 10 PSA <0.1
12 Jan 11 PSA <0.1
Erection OK

JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3887
   Posted 2/26/2011 6:54 AM (GMT -6)   
Two suggestions I would offer........

First, find an excellent medical oncologist that specializes in PCa for a better overview. Provenge is not the field for an urologist in my opinion. It is not a primary treatment and is not yet proven to be a cure all. My med-onc says it will be usefull, but not untill following proven therapies first.

Second, investigate High Dose Radiation Brachytherapy. It is a more refined and accurate version of seed implants that does a better job with less side effects. The best and most complete information I have found is at www.cetmc.com. It is by Dr Jeffrey Demanes at UCLA. He is the pioneer with HDR.

I used HDR along with IMRT as my primary therapy and added hormone deprivation as an adjuvant. I was a G 7, T2b, and PNI. My urologist would not operate as he expected he would have to leave cancer behind and didn't want to put me through the risk and side effects of surgery and then add the risk and side effects of radiation. He said at my stage the HDR and IMRT is more effective and less invasive.

With the people here and internet you can do a lot of research in a week or so. Take your time and relax as much as possible and read and search. I found it usefull to see different doctors and I met with 2 urologists (one did open and the other robotic), 2 rad-oncs (one was HDR and the other at the best seed operation in the country), and two med-oncs. I also read several books and searched the internet before deciding on the treatment. I was diagnosed in early September and started treatment in mid October only 5 weeks and a couple of days after the diagnosis.

Best wishes and keep the questions coming. The guys on this board have been through it all.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/26/2011 7:59 AM (GMT -6)   
Immediate cyber college: www.yananow.net      www.prostate-help.org       www.prostate-pointers.org         www.paactusa.org      (newsletters and info for advanced PCa)   www.ustoo.org     www.phoenix5.org  

Books- Dr. Strum's A Primer on PCa Dr. Pat Walsh's- Surviving PCa

Realize with PCa and higher stats, absolute no guarantees no matter what you may choose, some doctors are very biased, good to seek various opinions and know all you can. You could take casodex drug while waiting and determining what to do and some others have done just that. Get an actual copy of your pathology and know all it actually reveals. You could have your actual pathology slides(stored now) reviewed by like Dr. Bostwick www.bostwicklaboratories.com  a reknown expert in PCa pathology.
 
I had one surgeon tell me curative and next one Dr. Menon refused me and didn't want the patient to do it for nothing...I hope you find that interesting! I proceeded with 6 more opinions and learning more before diving off the cliff. Now that I dove off about 9 yrs. ago now, pleased with results and knew cure was not in the cards (I had higher stats of course and plenty of volume of PCa), lucky to be here and because of my protocols to be in the condition I currently am. Question everything along the way.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), ct and bone scans looked clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed again and still working

Post Edited (zufus) : 2/26/2011 6:10:13 AM (GMT-7)


wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 2/26/2011 12:11 PM (GMT -6)   
Devastated1.

Sorry to hear about your condition.

As others have mentioned, having a psa drawn soon after a biopsy may be misleading. The gland as just been invaded and it is generally thought that eight weeks (correct me if I'm mistaken, anybody) is the minimum time for re-test after biopsy.

You are young enough where if you decided on treatment, I'd do surgery first, and have radiation as a back up in the event of a re-occurance later. As you poke around the forums, you'll find that doing radiation 1st could make surgery a challenge if you go that route.

In addition, if you talk to a surgeon, they will want to do surgery. If you talk with a radiation person, they would want to do radiation therapy. Part of the maddening process of trying to figure out what to do.

All stuff you need to talk with your uro about. I'd also recommend a second opinion.

Just know that you are not alone and have good company here. This forum has been a very excelent coping mechanism for me.

W-O
Age: 55- good health. Exercise regularly.
DRE 11/08- no lumps, just enlarged prostate
PSA checked regularly, last 6.6/
Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen.
PSA risingto 8.0 thru 2010.
2nd biopsy- 2 positive cores, one a 3+3=6, 3% and the other a 3+4=7, 20%
Very last PSA- 12
DaVinci scheduled 2/14/2011

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 2/26/2011 1:26 PM (GMT -6)   
With an agressive G8 you want to hit it as hard as you can. This means some type of combination treatment such as surgery/radiation or seeds/IMRT and even adding hormone therapy to the treatments. Surgery/radiation will cause the most side affects. HT will have side affects while you are on it, but they will most likely not be permanent. Getting a good Prostate Oncologist, which was already recommended, will increase your probabilities of a favorable outcome.
Good luck
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Ivory63
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 2/26/2011 1:38 PM (GMT -6)   

I was in a very similar space as you when I was diagnosed in November 2008 at age 64.  I have never been as freighted as the day I was told I had PC.  My PSA was a 3, but a year before it was only 1.5.  My biopsy showed gleason scores of 6 and 7’s and I opted for robotic surgery to remove my prostate. 

 

After my surgery the pathology report showed I had a tumor with a gleason of 8 but it didn’t seem like anything escaped out of the prostate gland to the margin areas.  My first post surgery PSA showed a 0.02 where it remained for over a year.  My doctor suggested as a precaution I should get radiation treatments because of the high gleason score even though my PSA remained low and unchanged.  I did have the radiation treatments a few months back and my last two PSA’s have been undetectable.

 

I understand your fears and confusion as I walked in a daze for weeks.  My wife was instrumental in helping with my decision making process as my advocate.  The first place I came in the beginning was at this very forum which helped calm me down and also provided excellent comments of various procedures.  Everyone one told me things would get better and clearer after I crossed the metaphorical bridge after my surgery.  

 

Things will work out for you and it is helpful to find an advocate to discuss things with.


fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 2/26/2011 2:11 PM (GMT -6)   
Welcome to the forum.

I had G8 PC and ended up having IMRT and seeds. So far so good.
age 57 2/2010
PSA Feb 8.2
biopsy 2/2010 - 2 of 8 left & 2 of 8 right positive, Gleason 3+4=7
attended support group - advised to get a second opinion
second opinion on pathology from Johns Hopkins 4+4=8
PSA 15 4/2010
5 weeks IMRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 palladium 103 seeds 7/2010 at Chicago Prostate Center, Westmont, IL
PSA Oct 3.97, Dec 2.78
no ED or incontinence

Trepidation
Regular Member


Date Joined Feb 2011
Total Posts : 173
   Posted 2/26/2011 2:36 PM (GMT -6)   
English Alf said...
Welcome to the forum, (Sorry you find yourself here too)

The immediate thing you need to do it nothing. That sounds like a crazy notion, but what I really mean is that you need to take a deep breath and realise that even with Gleason 8 you can take a while to work out what to do next.
Provenge is meant to be the big hope so that could be a good option, but you'll have to ask a lot of questions about that.
Combination of surgery and RT can sort out a lot.

(Oh and by the way, having a jump in PSA level soon after a biopsy has more to do with the effect of the biopsy on the prostate than the cancer. My second uro completely ignored the PSA test my first uro did soon after he'd done a biopsy)

Alf
 
Some great points IMO. Never even allow a PSA test for at least a week after a digital exam. I saw someone here recommend a book, 'A Primer On Prostate Cancer' by a Dr. Strum, that helped me to at least better understand the terms.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 2/26/2011 3:02 PM (GMT -6)   
English Alf said...
Welcome to the forum, (Sorry you find yourself here too)

The immediate thing you need to do it nothing. That sounds like a crazy notion, but what I really mean is that you need to take a deep breath and realise that even with Gleason 8 you can take a while to work out what to do next.
Provenge is meant to be the big hope so that could be a good option, but you'll have to ask a lot of questions about that.
Combination of surgery and RT can sort out a lot.


QFT (quoted for truth) Take a deep breath and try to relax. Don't make any snap decisions and do lots of research. A G-8 isn't the end of everything even though it isn't the best diagnosis. Try to find the best specialist you can and hit it hard. As you can see from my sig' I was G-8 with tertiary 5 and so far I'm undetectable, no telling what the next year will bring but so far so good.

Wishing you the best.
Dave in Durango CO
_________________________________________________________

Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04....... 06-07-10 PSA <0.04..... 08-03-10 <0.04...... 10-26-10 <0.04...... 1-25-11 <0.04
05-03-10 1 week without pads
06-28-10 Success!!

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/26/2011 3:10 PM (GMT -6)   
Devasted1

Welcome aboard to HW, glad you decided to join us. You have already been given some good suggestions and ideas in your situation, so I won't duplicate them here. Good luck to you, ask away all the questions you need, no such thing as a stupid question among us. If you ever need or feel the urge to vent, this is a great place to do that too.

A Gleason 8 is a serious dx, wont deny that, but its not a hopeless one either for many men. We have plenty of brothers here holding their own and doing quite well with your numbers.

Please stay with us and keep us well posted of your personal journey

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/26/2011 4:50 PM (GMT -6)   
Trepidation- The book 'A Primer on Prostate Cancer-The Empowered Patients Guide by Dr. Strum and Donna Pogliano (2nd edition) is just plain excellent, glad you mentioned it and hope alot of newly diagnosed folks find this book and maybe Dr. Walsh's book(s), and some other good ones.

E. Alf- always a bloke with good advice from across the pond as you will find out

Purgatory- a caring brother to the max. as you will find out

Ask your doc how wild would it be to use casodex 50mg for a couple months while you look over all your options....then listen very precisely to his answers and post them back here if you could, it may reveal more than you would guess.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), ct and bone scans looked clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed again and still working

Trepidation
Regular Member


Date Joined Feb 2011
Total Posts : 173
   Posted 2/26/2011 5:02 PM (GMT -6)   
Thanks,
 
read the book and still reread it but why would a drug like casodex be something to try first before sugury or radiation? I do like the idea of targeted needle biopyses tha Mr. J. T. said above. that makes sense to this new guy.
 
 
Thanks, still learning.

Devasted1
Regular Member


Date Joined Feb 2011
Total Posts : 494
   Posted 2/26/2011 11:33 PM (GMT -6)   
My sincere thank-you to all of you that took the time to share your wisdom and best wishes on my behalf. It is comforting to hear your suggestions and I will take a deep breath, take my time, do additional homework, etc to continue my education on this subject. It is is a relief to hear that you all experienced the same emotions when diagnosed. I know my Gleason 8 is higher than most that responded, but hopefully the cancer has not spread past the capsule. I just had a CT Scan and Bone Scan today and waiting for the results. Hopefully, my lymph nodes, bones and organs are cancer free.

I also picked up the book many of you recommended Dr. Walsh's Guide to Surviving Prostate Cancer and will read it over the weekend and re-read as suggested.

I will ask my urologist oncologists about taking Casodex prior to surgery and will let you know his comments regarding the prescription.

I have so much to learn in such a short period of time, but it is wonderful to have this forum with so much useful information and your suggestions and best wishes. I will keep you posted on this journey into the abyss that all of you have experienced heretofore.

Again, thank you for taking the time to respond to my plea. I welcome any and all thoughts, comments and suggestions on how to survive PCa that has helped you survive this horrific cancer.

Devasted1
Regular Member


Date Joined Feb 2011
Total Posts : 494
   Posted 2/27/2011 3:19 PM (GMT -6)   
I have a question that maybe one or more of you can answer. My urologists oncologist is experienced with both the open retropubic cut and davinci robotic technique and had great experience doing both. He is willing to do the operation with either approach but based on his experience he is recommending the retropubic open cut because as he says he can do a better wide cut than if he used the Davinci approach.

Does his suggestion and approach make sense to anyone?

i am trying to figure out how to do my signature like many of you have and need some guidance as to how to set it up.

Thank you in advance for your insight, comments and suggestions. It is very informative and helpful.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 2/27/2011 4:03 PM (GMT -6)   
Devastated, (great screen name BTW)

I was a G-8 with tertiary 5 so we're in the same boat, my Dr also preferred open as she felt she had a better "feel" and more control over the surgery. It seems results are all over the map with either surgery, if the Dr you chose is more comfortable one way, then go that way IMO. Being a young guy like me (55 at surgery) you should bounce back quickly, I was in at 0630 on Monday March 1 '10 and out of the hospital at 1830 on Tuesday the 2nd after my open surgery.

In my case radiation was on the table but I'm holding off to see if I have a bump above undetectable, if so then we'll take that step. I asked my Dr about hormones before surgery gave an emphatic NO, she said it can make the surgery harder due to what it can do to the gland as well as messing up the PSA readings after surgery. She didn't specify what it can do to the gland.

As to your sig, go to "my profile" up near the top of the page then on the next page go to "Edit Profile" down at the bottom of that page you'll see a field to enter your pathology and a short history. It's limited to 400 characters so I keep a long version in a text file (notepad) and cut and paste it where a longer version may help a poster.

Glad you're getting a handle on it, this is probably the scariest thing any of us will face, but with today's advances it's not the end for most of us. For me, I had about a few weeks of varying degrees of denial and shock with a bit of depression tossed in for good measure, then things started to get better, today I still am not happy with the fact that this has happened but so be it, resolve takes over from fear and we deal with things the best we can.

Wishing you the best
Dave in Durango CO

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/27/2011 4:06 PM (GMT -6)   
Devasted, also, after you make your sig., you must click the 'add sigh' box each time you post to make it show. It is set for a default off position. Most guys will post their sig on the first post of a thread, then leave it blank the rest of that thread. Oh, welcome, by the way... turn
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 12/10-.09, 02/11-.08
ED-total-Bimix 30cc

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7085
   Posted 2/27/2011 4:25 PM (GMT -6)   
Dev,
 
I selected my surgeon, rather than the method. He was trained and spent many years doing open, then switched to DaVinci. He did have me discuss open with a partner who still only does open. There was no "winning" argument based on what I knew at the time, and going back to listen to the tapes of our various consults, although I do hear things now that I don't remember, nothing tells me I did the "wrong" thing.
 
Just my experience -
 
Welcome to HW, as much as we all wish you didn't need to be here.
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/27/2011 4:34 PM (GMT -6)   
devasted:

The conversation of open vs. Robotic goes on and on. The most important part of the surgery is the surgeon. My surgeon does open only, and he had nearly 30 years of experience doing then when he did mine. His practice has now beein doing robotic as well, for about 2 1/2 years now. Not sure how many they have done.

My guy still likes the hands on approach, and the tactile feel of having his hands inside. Some argue about the magnification advantage about robotic, and that is basically true, but open surgeons use other magnification means like screens by the operating table and lit and magnified hoods. Hospital time is all over the place, I needed a full 4 1/2 days myself, as there were some complications, yet we have had men here leave after an open surgery in less than 36 hours. While most robotic guys are home in 24 hours or less, some to complications have been in the hospital 4-5 days. If you have good insurance, I think the hospital part is a mute point.

Whether you have one larger incsision from open, or 5 from robotic, they still can hurt and need healing. Regardless of open or robotic, its a very complex and difficult surgery, one of the tough ones my surgeon said. So it still comes down to the surgeon's skill and expertise.

Some guys opt for the nationally known surgeons, and I have no issues with that, but I am one that feels there are hundreds, if not thousands of great local surgeons, who will be there to care for you after the fact, if you have complications or side issues. No one more than 50 miles or so away from where I live probably would have any reason to hear of my surgeon or my hospital, but I receieved excellent care at the hands of both of them.

Your overall healing curve depends on too many factors to answer. I.e, your overall health and physical condition to start, other medical conditions you may have currently, past medical factors, etc. Some guys jump back into their lives within a handful of weeks, and others, a year later still having issues.

Its important to know, despite a doctor's fame, there are no guarantees in PC surgery. There is no re-set button, no way to undo it once it is over. When you look at incontinence issues and ED issues, the results are inconsistent and all over the board.
So have realistic expectations about how you will or might end up.

I know you have a lot to think about

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

Newporter
Regular Member


Date Joined Sep 2010
Total Posts : 225
   Posted 2/27/2011 8:09 PM (GMT -6)   
Sorry you have to join us but we welcome you into the brotherhood with open arms!

Being recently gone through what you are going through, I regret, I should have learned more about prostate cancer, treatment options and side effects before surgery rather than after, which is like shoot and then aim. But like an ignorant, I really knew very little even though I did a lot of "research". :(

So, like others, my first advice is, read all the books, research the web, join forums, take your time and learn as much as you can about the disease, the treatment options and the side effects so you can be as informed as possible and become a well informed "buyer". Even as a G-8, you have time.

My second advice is be more open to all treatment options.

My third advice is that selecting the right doctor for you is more important than the treatment options. Not just his skill, but one you are emotionally comfortable with because there are a lot of emotions he has to guide you through.

I could have chosen any surgeon in the country but bypassed a number of nationally known surgeons to pick a local doctor who had done >1000 robotics but more important, provided me with excellent emotional supports. There are many many excellent no name doctors that can do as good a job as the rich and famous.
65 Dx June-2010 PSA: 10.7, biopsy: Adenocarcinoma, 1 core Gleason 6, 3 cores atypia; Clinical stage T2; CT, Bone Scan, MRI all negative

8-23-10 Robotic RP; Pathology: Organ confined, negative margins, Lymph nodes, Seminal Vesicle clear; PNI present; multiple Adenocarcinoma sites Gleason 3+3 with tertiary Gleason 4+. Stage: pT2,N0,Mx,R0

Catheter out 8-30-10 no incontinence, no ED. 1/2011 PSA: <.1

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 2/27/2011 11:01 PM (GMT -6)   
If your surgeon is ALREADY talking about followup radiation treatment, ask him what benefit the surgery will provide? Most radiation oncologists will tell you they can get you to the same place without the surgery...

As a Gleason 9 with a PSA around 10, I chose surgery KNOWING the chances were 50-50 at best. But 50-50 is better than nothing...In my case, the surgery failed and I have just completed salvage radiation and HT is ongoing..So over a four month period, I have endured all three primary treatments..At this point I am continent, impotent and my PSA is undetectable..After 3 months on ADT, the only noticeable side effect are the hot flashes which are annoying, especially at night..

There have been studies that have shown with high risk (that's you and me and all the G-8 and up guys) doing surgery + radiation + HT gives the best chance of long-term survival...But the brachytherapy + IMRT combined treatment does just as well if not better without the risks and side-effects of surgery..Finding an R-doc who is competent in doing brachytherapy is not as easy as it sounds.. Best of luck to you..
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/28/2011 8:34 AM (GMT -6)   
Fairwind- excellent and shows how open minded you are and I know you have read and looked at plenty on PCa in the last couple years. There is such a thing as 'over treatment' even though to us laypersons...we cannot comprehend that message, sometimes. It is mentioned by leading Oncologists and like Dr. Barken also. So, how much does one wish to subject themselves. You would have to be very objective about your own case or pathway. As Fairwind shows his path, he is saying maybe you should consider other than his path, very objective and non-biased from a fellow patient. One should take some caution on endorsements and 'guaranteed' sounding results. The more you know about this beast, the more you understand it is complex and less than pure science. There are exceptions all over the place, basically full of no rules and non-definitiveness.

You have choices to consider, many of them, and you should make an input into what you wish to have for side effects and quality of life along the way. Sadly not all can be cured even with lower stats, but the disease can be highly controllable for long periods of time and new things like vaccines are already here (Provenge) and more goodies coming. Better control is coming maybe even cure methods, worth thinking about that too. Get ready to weigh everything on your scales of judgement...it is usually a one way journey.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), ct and bone scans looked clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed again and still working

Devasted1
Regular Member


Date Joined Feb 2011
Total Posts : 494
   Posted 3/1/2011 1:17 AM (GMT -6)   
I just finished Dr. Walsh's Guide to Surviving PCa. I would like to ask my fellow brothers that went down the wide beam radiation, brachytherapy and hormone treatment to get your viewpoints on how the procedures went, side effects, fatigue, incontinence, impotence, bladder and intestines,impact. etc. Do they do the 3D for the wide beam to only radiate only the prostate or did they kill good cells at the same time of destroying the PCa cells?

I know radiation has greatly improved over the last ten years but I am a little skeptical and would appreciate any and all of your comments, experiences, sideeffects, etc.

Thankyou.
Born July'`1959
DRE Positive
Biopsy 7 out of 12 Positive
Gleason 4+4 both sides
PSA Jan 2011 5.5
Diag. February 15, 2011
Participant in Provenge Study
Surgery Scheduled for Aprtil 28
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