diagnosed today - now what?

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d-in-sc
Regular Member


Date Joined Mar 2011
Total Posts : 33
   Posted 5/20/2011 7:49 PM (GMT -6)   
Hello everyone,
 
I was given my diagnosis at 4:25pm today that I have PCa. My head is swimming and all I can think of is my 6 year old little girl and her future.
 
I'm not sure what to write, other than what I remember I was told.
 
12 samples, 2 positive, 10% each. Left side lower corner, and mid section just above it.
 
Gleason score of 6, which he said the majority of people have when diagnosed.
 
He does not expect that it has spread outside the gland. I think he said it was rated as moderately aggressive, but I an not sure as I was still trying to grasp the news.
 
The Doc said he was surprised to see the results as he thought I just had a normally elevated PSA. I'm glad I insisted on the biopsy even though PSA was steady.
My concern is he was surprised by the result, I hope there is no other surprise he is considering not likely.
 
I got the projection of 70-80% for long term survival, I take as meaning 15 years. This is really bothering me, as I said I have a 6 yo girl and plans for seeing her into her 30's or more.
 
some questions if anyone can help.
- How to select a surgeon?
- Could these other sensations I've had ("buzzing" or tingling, hotness, feeling of pulled muscle) in my groin indicators of disease more severe, or spread, than the test results show?
- Has anyone had a Gleason score under 5 or 6?
- Is the 70-80% for 15 years a known statistic or specific to my case?
 
Everyone here was very supportive with my questions before today. I appreciate it very much.
 
Thanks,
 
 
 
 
age 49, 50 in about 2 weeks
Prostate size ???
8/24/10 - 40g
3/18/11 - 20 - 30g
symptoms - weak flow
PSA
5/2009 - 3.0
5/2010 - 3.1
9/2010 - 3.1
3/29/11 - 3.0
Free PSA
3/29/11 - 13
Diagnosis 5/20/11 Gleason 6, left lower and left mid
12 samples, 2 positive, 10% disease in each

reachout
Veteran Member


Date Joined May 2009
Total Posts : 739
   Posted 5/20/2011 8:21 PM (GMT -6)   
Welcome, d-in-sc
Sorry you got the report we all hate to hear, especially at your age. But take a deep breath and relax, your numbers show a pretty early stage, you have a lot of options, and long term survival (15+years) is almost a given for someone with your numbers. I'll give a quick shot at your questions:

- How to select a surgeon?
Number of procedures, I looked for someone with 250+, and a positive margin rate at least as good as the standard, say single digits. However, you're jumping the gun, your numbers are low enough you should also consider seeds or active surveillance. You have a lot of time to study the various options and their side effects, and there's a lot of info on this board.

- Could these other sensations I've had ("buzzing" or tingling, hotness, feeling of pulled muscle) in my groin indicators of disease more severe, or spread, than the test results show?
Anything is possible, but that would be extremely unlikely in your case. If that was the case, you should play the lottery.

- Has anyone had a Gleason score under 5 or 6?
For practical purposes, 6 is the lowest score at which you need to think about doing something to fix the problem. I'm not sure I've seen any 5's on this board, though there probably have been.

- Is the 70-80% for 15 years a known statistic or specific to my case?
Either your urologist is not up to date on the statistics, or you misunderstood him. He may have meant the probability of organ confined cancer. If you had surgery (which you may not need) and the pathology report was consistent with your PSA and biopsy, your chance for 10-year progression-free results would be around 98%. For 15 year it would be a little less, but 70-80% is too low. That's just PSA progression-free, and if you did get PSA progression, there's other things that can be done to keep you going for a long time. You can play with the nomograms here
http://nomograms.mskcc.org/Prostate/index.aspx

Bottom line, at this point, just study the options. Unless your urologist is holding something back, from the numbers you posted you are in the low risk group and surgery is just one of many options, including just watching it for now.
Age: 66
PSA: bounced around from 2.6 to 5.6 over 2 years
Biopsy 8 of 12 +, G 3+4, T2a
DaVinci 9/09, path G 4+3, - M, NX, MX, T2c
Continent right away
ED pills did't work, Trimix works well
Post-surgery PSA:
12/09 <0.1
4/10 <0.014
6/10, 9/10, 12/10 <0.1
4/11 0.05
5/11 0.05

freinds
Regular Member


Date Joined Jun 2010
Total Posts : 76
   Posted 5/20/2011 9:25 PM (GMT -6)   
d-
Sorry to hear of your news. I was just checking HW as it was about 1 year ago I had the same news. Sounds similar to me, my age was 50 with psa of 3.6 and gleason of 4+3. One thing I found out was there were a LOT of people ready to give advice, I heard all about how I should get seeds or protons but in the end to me it just made the most sense to have it surgically removed so I can know just what was in there. I am happy to say that I have now had three zero psa tests and have virtually no urine problems. I agree with the above advice that says find an experienced doctor (I think the guidline I read is 250 surgeries).  The guy I had did 1200 but we have a local guy who has only done 120 but I have spoke to 3-4 people who were very pleased with his work. In the end I guess it needs to be a balance between his experience and your comfort level with his education, personality and the facility.
Here is a few things I found very useful:
 
1) Get a book called "Prostate Cancer for Dummies" very informative yet not scarry. All the information I found to be accurate after the fact.
 
2) If you can find a local Man to Man prostate support group try to go even just for 1 meeting. I found it to be a good resource for information,  including the scoop on local doctors.
 
3) There are simply so many decisions to make, even after selecting a treatment you need to choose a facility and doctor. Pray for Gods wisdom in these matters.
 
Best wishes to you and I'm glad you found this site - It too was a great help both pre and post treatment. 
age 50, diagnosed April 2010

pre-op PSA 3.7
One month post surgery PSA ZERO, 6mo zero
Gleason 6 upped to 4+3=7 post surgery
SVI yes
Surgical margins clear

Bone scan clear

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/20/2011 9:30 PM (GMT -6)   
d,

you been given some pretty good advice already. are you in SC also, if so, where. I am outside of Greenville.

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 margin
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, 2/11 1.24, 4/11 3.81
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 9/10

d-in-sc
Regular Member


Date Joined Mar 2011
Total Posts : 33
   Posted 5/20/2011 9:45 PM (GMT -6)   
Reachout,
 
Thank you for you feedback and the time taken to provide it, and your sense of humor. Your reply has helped settle some nerves and initiated positive thoughts. 
 
You mention radiation. The Doc said that if radiation was used now, it would make it much more difficult to treat any reoccurence because of scarring.  Does this make sense?
 
Is there anyone here that was treated with Proton Therapy? If so, what are the pros/cons?
 
Thanks again to everyone.
 
 
 
 
 
 
age 49, 50 in about 2 weeks
Prostate size ???
8/24/10 - 40g
3/18/11 - 20 - 30g
symptoms - weak flow
PSA
5/2009 - 3.0
5/2010 - 3.1
9/2010 - 3.1
3/29/11 - 3.0
Free PSA
3/29/11 - 13
Diagnosis 5/20/11 Gleason 6, left lower and left mid
12 samples, 2 positive, 10% disease in each

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 5/20/2011 10:09 PM (GMT -6)   
We are all sorry you have been diagnosed with PC but you should know this..Men diagnosed with G-6 have a 97% chance of dying of something else...Gleason 6 PC is NOT a killer and it CAN be cured. You will live a long time..

There is one fly in the ointment..While the 12-core biopsy is pretty accurate, it only samples a VERY small percentage of the gland..It IS possible that it missed some higher-grade cancer..Not probable, but possible..The ONLY way to be SURE about what you are dealing with is to have the entire gland surgically removed and biopsied..

You will want to learn all you can about PC and its treatment. Two good books are Dr. Patrick Walsh's "Guide to surviving prostate cancer" and Dr. Gerald Chodak's "Winning the fight against prostate cancer"..

With G-6 PC, virtually ALL the treatments are equally effective, surgery, beam radiation, seeds, cryogenic, you just need to figure out which one is right for you...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

mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 5/20/2011 10:43 PM (GMT -6)   
Definately, as the others above have already stated, don't go off the deep end over this. I know, I did when I was diagnosed with essentially the same stats as you have. But there are many people here who can give you great advice about what to consider next. I have to admit that having both of my parents die from colon and breast cancers I was of the school of get the cancer out as soon as possible. Even my surgeon told me I could go home for 6 months and think about all the options. You have a relatively low aggressive cancer. Gleason 6s don't appear to spread very often outside the prostate capsule. Of course the biopsy could have missed a higher grade cancer since the needle biopsy is like taking 12 shots in the dark, as somebody already pointed out. And yes if you have surgery and then the cancer ever comes back you still can have radiation whereas the reverse situation is not as easy. But there are other options like AS, active surveillance, where you have repeat psas and biopsies every 6 months or once a year to see if the gleason 6 cancer is really going to progress, since many studies show it may go absolutely nowhere. Many studies now show that doing no intervention is as good as doing either surgery or radiation as far out as 12 years without having any side effects. And there are a couple of seeds/radiation guys on here who can give you great advise about those options since many studies show much lower rates of incontinence and especially ED with seeds/radiation. The good news is its a gleason 6 and you have a lot of options. The bad news is its a gleason 6 and you have to decide whether to treat it at all and to live with the possible sideeffects of incontinence and ED if you do treat it............
My age= 52 when this all happened.
DRE=negative,
PSA went from 1.9 to 2.85 in one year, biopsy ordered,
Second biopsy on 08/14/08 found 2/12 cores positive for CA on R side, 1 core=5%CA, other core=25% CA, Gleason score= 6 both cores,
Bilateral nerve sparing robotic surgery on 09/11/08, pathological stage T2A,
No signs of spread, organ confined,
6 0's in a row, still use trimix for ED

GTOdave
Regular Member


Date Joined Oct 2010
Total Posts : 175
   Posted 5/21/2011 7:49 AM (GMT -6)   
D in SC,
Your message is precisely why I still lurk here, to find someone who presented with virtually identical stats as mine.

At just under three months post-op (DaVinci), I have zero side effects. Like the procedure never happened. I am a lucky SOB! There are a good number of ways to treat and cure this disease, especially for us fortunate G6 guys.

I did make the early mistake of entrusting my care to a URO who proved himself entirely unworthy of my confidence, but found another who was more than up to the task of roto-rootering in my abdomen. So DO TALK TO MORE THAN ONE DOC!

I have every confidence that your 6 yr. old daughter will have her dad around for many decades to come.

Dave
52 yr old, PSA 3.5, Gleason 6 with 3 of 4 top nodes (0%;1%;10%;1%) cancerous. Bottom 2 floors are clean.

PSA 7/08: 2.2; 7/09: 2.9; 7/10: 4.1; 11/10: 3.5

First post-op PSA =.00! 7 weeks after operation

DaVinci surgery at Yale 3/4/11. Dr. John Coleberg THE BEST!!!

45 gram gland weight
Gl 3+3
PT2C
margins clear
no metastasis
5% of gland adenocarcinoma

reachout
Veteran Member


Date Joined May 2009
Total Posts : 739
   Posted 5/21/2011 8:44 AM (GMT -6)   
D-in-sc, the others have given you good replies to your radiation vs surgery question so I have nothing to add. Read through the recommended book, talk to a good radiation guy and another urologist or two, then decide what you want to do. And as others have said your daughter will have her dad around for a very long time as long as you look both ways before crossing the street. For the next 15 years that's more likely to kill you than PC.
Age: 66
PSA: bounced around from 2.6 to 5.6 over 2 years
Biopsy 8 of 12 +, G 3+4, T2a
DaVinci 9/09, path G 4+3, - M, NX, MX, T2c
Continent right away
ED pills did't work, Trimix works well
Post-surgery PSA:
12/09 <0.1
4/10 <0.014
6/10, 9/10, 12/10 <0.1
4/11 0.05
5/11 0.05

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 5/21/2011 11:18 AM (GMT -6)   
D,
Lets look at your stats: your pas has not risen in 3 years; your psa density is 1 or less. You have a G6 with only 2 positive cores. You have very low core involvement. There is nothing to indicate at this time that your cancer is even moderately agressive. All indications are that you are in the very low risk catagory.
No rise in psa means that your cancer is stable and not growing at this time and the vast majority of your pc can be explained by the size of your prostate, not by the volume of prostate cancer.
Read "Invasion of the Prostate Snatchers" by Dr Mark Scholz as it is written for men in your precise situation. 50% of me your age have exactly what you have, very lwo grade PC that should be monitored closely. This doesn't mean that you will never be treated, but the odds are definately on your side. At the very least you can delay treatment for a number of years very safely and avoid all side affects of treatment.
All prostate cancer is not the same; it ranges from harmless to very agressive and all conditions inbetween. You are definately on the lower end of the spectrum. I would wait, have your psa checked every 3 months and get another biopsy in a year to see if there are any changes in your condidtion. You should also get a doctor that is familiar in monitoring patients with low risk PC or get into the active survelience program at many institutions like Hopkins or UCSF. If you wish you could get a color doppler ultrasound that will identify the precise location and size of your tumor, then you can make a more informed decision. You have much more risk in getting treated at this time as you will have to live many years with the side affects of any treatment. By all means you should get 2nd opinions on your condition and on your biopsy slides and the best step would be to see a medical oncologist specializing in prostate cance. There is a list of oncologists in the back of Dr Scholtz's book.
JohnT
66 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, 4 weeks of urinary frequency and urgency; no side affects since then. 2 years of psa's all at 0.1.

SkeeterZX22v
Regular Member


Date Joined Apr 2011
Total Posts : 240
   Posted 5/21/2011 1:43 PM (GMT -6)   
d-in-sc said...
Reachout,


Thank you for you feedback and the time taken to provide it, and your sense of humor. Your reply has helped settle some nerves and initiated positive thoughts.



You mention radiation. The Doc said that if radiation was used now, it would make it much more difficult to treat any reoccurence because of scarring. Does this make sense?



Is there anyone here that was treated with Proton Therapy? If so, what are the pros/cons?



Thanks again to everyone.


D,

I am in a similar situation as you, only 11 years or so older. The first thing I would say is to not panic, take your time and investigate all of the treatment options available to you, and then make the treatment decision that you are comfortable with.

I am in the process of starting proton therapy treatment now at Indiana University in Bloomington. I chose proton therapy in part after talking personally with several men from my community who have been treated there. All were very satisfied with the treatment and all had virtually no side effects from the treatment. Every doctor that I talked with told me that with my diagnosis all of my treatment options had the same effective success rate.

This board is weighted toward those who have chosen surgery, and that may be your ultimate choice as well. But frankly I did not want to risk the higher chances of incontinence and ED that according to all of the statistical reports I could find were greater with surgery. I have also talked with several men in my community who had surgery, mostly at Vanderbilt, and the majority still have incontinence and ED issues. If I were convinced that surgery offered a significantly higher cure rate, then I might take another look. But I have not found anything that says this, and neither have the doctors I have talked with.

There are other radiation options besides proton therapy, and you should look at them as well. One of those might be the best for you. I am fortunate that I live reasonable close to the proton therapy center at Bloomington, and that I am able to take the time to go there for the 9 weeks of treatment.

You have a very good chance of living a long life, and dying of something other than PCa. Good luck and bet wishes.
Age 61, psa 4.6, 30 days cipro, psa 4.3, biopsy 4/28/11, 2 of 12 cores positive, Gleason 6
T1c
Central Ky

mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 5/21/2011 2:29 PM (GMT -6)   
d-in-sc

Sorry you had to join our club, but glad you are seeking some imput into you problem. Please get a second opinion for what to do for your treatment. There are many options you can take but I would seek out a Dr or hospital program that has a multi-disiplinary approach to treating PC. Duke University Hospital in Durham has such a program that I found worked very well for me. I had open surgery in May 2007. My Dr. is Judd Moul and I would not hesitate to recommend him If you decide on surgery. All you have to do is pick up the phone and call them. I live near Asheville and found the commute to Durham not too bad. If you need any more info, let me know.
age at dx 54 now 58
psa at dx 4.3
got the bad news 1/29/07
open surgery Duke Medical Center 5-29-07
never more than 2 pads
ED is getting better
the shots work great, still can't give them to myself
three years of zero's
Retired again after 36 years February 1, 2010

Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 5/21/2011 2:39 PM (GMT -6)   
Not sure where you got this info:

" I got the projection of 70-80% for long term survival, I take as meaning 15 years. This is really bothering me, as I said I have a 6 yo girl and plans for seeing her into her 30's or more"

According to MSK nomograms, you'll be just fine at 99% cancer free at 15 years, (that's with a 1997 t2a tumor stage.)

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 5/21/2011 5:19 PM (GMT -6)   
D,

As a Gleason 6, you should probably worry more about teenager drivers who are tweeting and texting while doing 60 mph than not being around for your 6 year old.You are very treatable and have plenty of time to learn all you can before deciding on your treatment. The dx was a downer for all of us....but the more you learn, the more positive you will feel.
Regards,

Joe
Age 68 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. 25 IGRT sessions ending 3/22/10 - some fatigue until 30 days after last treatment. PSA as of 4/14/11 - 0.1

d-in-sc
Regular Member


Date Joined Mar 2011
Total Posts : 33
   Posted 5/22/2011 5:48 AM (GMT -6)   
Thanks everyone, I am very appreciative of all the feedback, and references. Part of the anxiety comes from not having a plan and the data here is helping to forumlate one.

God bless

d
age 50
DRE Neg
Prostate size 16cc
PSA history
5/2009 - 3.0
5/2010 - 3.1
9/2010 - 3.1
3/29/11 - 3.0
Free PSA
3/29/11 - 13
Diagnosis 5/20/11
Gleason 6
12 cores, 2 positive
left lower 10%
left mid section 10%

rcroller
Regular Member


Date Joined May 2011
Total Posts : 327
   Posted 5/22/2011 7:07 AM (GMT -6)   
I'm a newbie here and don't have much to add other than to tell you it will get better. I was diagnosed three weeks ago and being "high strung" to begin with the anxiety was overwhelming at first. I paniced with a G8 diagnosis and did rush to a treatment decision (which is not recommended here). Once I had the plan in place I did feel better. I had my open RP five days ago. Take it one day at a time and stay in the moment. It's easy to let the mind imagine all the future possibilities, but none of them are real. The only reality is the present. Learn all you can, live each moment, and find comfort in the fact that you are not alone. This forum is a great source of support and information. Be well.
-Bob
Age 53-PSA 8/10 3.0 PSA 2/11 3.5
4/15/11 BX
4/21/11 Path Report: 3 of 12 PCa, 3+3, 3+4, 4+4; Left Side 4/29/11 PCa DX, Gleason-8
5/6/11 BS: Negative
5/18/11 open RP Performed
5/20/11 Home from Hospital

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 5/22/2011 7:20 AM (GMT -6)   
d-in-sc said...
Hello everyone,


I was given my diagnosis at 4:25pm today that I have PCa. My head is swimming and all I can think of is my 6 year old little girl and her future.



I'm not sure what to write, other than what I remember I was told.



12 samples, 2 positive, 10% each. Left side lower corner, and mid section just above it.



Gleason score of 6, which he said the majority of people have when diagnosed.



He does not expect that it has spread outside the gland. I think he said it was rated as moderately aggressive, but I an not sure as I was still trying to grasp the news.



The Doc said he was surprised to see the results as he thought I just had a normally elevated PSA. I'm glad I insisted on the biopsy even though PSA was steady.


My concern is he was surprised by the result, I hope there is no other surprise he is considering not likely.



I got the projection of 70-80% for long term survival, I take as meaning 15 years. This is really bothering me, as I said I have a 6 yo girl and plans for seeing her into her 30's or more.



some questions if anyone can help.

- How to select a surgeon?

- Could these other sensations I've had ("buzzing" or tingling, hotness, feeling of pulled muscle) in my groin indicators of disease more severe, or spread, than the test results show?

- Has anyone had a Gleason score under 5 or 6?

- Is the 70-80% for 15 years a known statistic or specific to my case?



Everyone here was very supportive with my questions before today. I appreciate it very much.



Thanks,


Hi D in SC...

I know exactly what you're going through. My stats were very similar to yours and I had the same exact thoughts as you. My kids were 13 and 10 at time of diagnosis. Please feel free to email me if you have any specific questions or concerns about this process.

Regarding the 15 year limit, please note that these studies don't really go beyond 15 years . Advances in all types of treatments are such that most of those studies could be considered outdated anyway. Even the way of grading gleason scores has changed in the last ten years. Although I have the same exact concerns as you creeping in the back of mind all the time, it's pretty widely agreed upon that our disease, in most cases, is one that can be beaten quite easily. I do know many many people who had open surgeries in the mid 90s who are still doing fine. And things have progressed so much since then.

I see that you seem to be inclined towards robotic surgery. Based on my experience witht he same procedure I can tell you it's a wise choice. You're too young to be messing around with this. Radiation, from what I was told by numerous specialists can have the same success rate, but as your Uro told you, you cannot have surgery as a back up if needed. Also, depending on your character you have to decide if you a) just want the compromised prostate out of you for good with hopes of confinement, and b) if you prefer a one day procedure with relatively minor recovery or a drawn out process over a few months. That's totally dependent on your personality. I just wanted to get the thing out, hope the pathology would be great and then worry about recovery. In my case I was very fortunate and blessed by the skills of a great surgeon and had no issues at all with urinary control and within weeks was having sex. It's not the same exact thing as before, but considering how I felt before surgery I feel blessed by the outcome. I write this to you 5 months out of surgery.

Regarding surgery, if that is indeed what you select, I would say the following... you must seek out the best possible surgeon out there for you. The skill of your surgeon, along with your health and sexual health going into this surgery will determine how quickly you recover and to what extent you recover. This is a choice you will have to make. I turned down my guy who had performed 400 of these for a guy who has performed over 3000 and who is also an oncologist with experience in open and laprosco surgery.

The surgery honestly is a very doable process, one in which we learn al lot about ourselves. A week after surgery you will be driving around and if your work consists of desk work you will have the option of working. I can work from home so was on my computer working days after surgery. In all honesty the first 3-5 days I spent in bed, sitting and trying to walk as much as possible But after that, and certainly after the catheter was removed, I was almost back to normal or to my new normal at least.

It sucks to get this at our age. As great as things went for me I'm still mildly depressed abut it, very anxious and frankly, pissed off. There are great days and terrible days. In my case the ups and downs, probably caused by post traumatic stress are either very high or very low. When i'm "high" i see how lucky I am to have gotten through it and all is good, but every now and then thoughts like that 15 year max creep into my mind. Technically they're irrational thoughts, but you know how our minds can work. I have received some wonderful advice regarding this new aspect of our life from many here and I am sure you will as well. They tell me we adapt to the worry and 3-6 month PSA cycles and learn to love life even more than before without taking it for granted. Although this will surely take time, I can agree with many who claim it's a better way to look at life anyway in the long term.

Be very selective in the surgeon you choose if you indeed stick with the surgical option. You get one shot at this and you want the best there is out there even if you have to travel 100-200 miles.

I am available to discuss by email or phone if you want. You'll be okay, this is a very treatable disease.

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6050
   Posted 5/22/2011 11:00 AM (GMT -6)   
I was gonna take a break from posting but, listen to John T on this one, Research all you can about low risk indolent PCA. Google it. Get the slides reread by Expert , in spite , of what some here have said about the need for it and not just by a pathologist down the street. Do not be a poster boy for over treatment,. At least find a urologist who is open minded about AS. It could be years before you need treatment, if ever. AS is as valid an option as all the other options and is considered so by many top PCA "experts ", If the " fear " of cancer is overwhelmingly trumping your" rational " side, go for treatment and all that that involves. Based on the validity of biopsy, you are now a posterboy for AS
Diagnosed 8/14/09 psa 8.1 66,now 67
2cores 70%, rest 6-7 < 5%
gleason 3+ 3, up to 3+4 @ the dub
RPP U of Wash, Bruce Dalkin,
pathology 4+3, tertiary5, 2 foci
extensive pni, prostate confined,27 nodes removed -, svi - margins -
99%continent@ cath removal. 1% incont@gaspass,sneeze,cough 18 mos, squirt @ running. psa std test reported on paper as 0.0 as of 12/14/10 ed improving

Post Edited (logoslidat) : 5/22/2011 10:04:33 AM (GMT-6)


142
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Date Joined Jan 2010
Total Posts : 7078
   Posted 5/22/2011 11:16 AM (GMT -6)   
Let's be precise about surgery as a backup to radiation. It is not true that once you have radiation, you "cannot" have RP surgery.
 
It should be attempted only by highly skilled, experienced surgeons, and it is said to be most difficult, with a much higher incidence of complications and side effects (paraphasing Dr. Peter Scardino's comments from his book). It is almost a "rule" here to say it can't be done, and my uro made the same cursory comment, but followed with the point that given unlimited resources, you will find someone who specializes in almost anything. I don't have unlimited resources. Finding that comment was only possible because I recorded the sessions, and went back to listen again several times. The first "Cannot" dulled my memory for the following comments.
 
It might be better to say that while it physically can be done, it is not practical.
 
I tried to consider the possibilities of success balanced with side effects when I chose my first line treatment. In my case, IGRT presented a lower success rate. In the end, the PCa was worse than believed from the biopsy, so IGRT came along anyway.
 
I know I'm splitting hairs here, but ....
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 5/22/2011 11:36 AM (GMT -6)   
The misconception that there are no treatments after a failed radiation is blatenly false. First salvage surgery is more difficult, but it certaintly can be done by the few doctors that specialize in it. There are also much better salvage options; seeding witn low or high dose Brachytherapy, cryosurgery, cyberknife or HIFU. All have the same effectivenesss as as radiation for a failed surgery.
You have to understand the reasons for a failed surgery: 1. The cancer has already gone systemic and no salvage treatment will be effective. 2. The surgeon left small amounts of prostate tissue and some of this contains PC cells; this is more common than you think, especially with inexperienced surgeons. 3. The tumor has extended into the margin and is still in the prostate bed. Reasons 2 and 3 are ideal for salvage radiation, but it is highly probable that if radiation was the primary treatment in this case it would have been successful.

The proof of this is that for low risk cancer the surgical success rate is 85% based on clinical pathology; this is the pathology you receive from a biopsy. If contained, as indicated by post pathology then the cure rate is 98%. The difference of 13% is caused by the three above reasons. The success for primary radiation for clinical low risk PC is about 96%+; so radiation is eliminating reoccurrances caused by prostate tissue left behind or pc in the bed outside the surgical margins.
JohnT
66 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, 4 weeks of urinary frequency and urgency; no side affects since then. 2 years of psa's all at 0.1.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 5/22/2011 11:55 AM (GMT -6)   
Dear D-in-SC:
 
Sorry about your dx and I'm not surprised that your head is swimming a bit.  But, you WILL sort it out and likely have a very good outcome.  Some comments on your situation and this thread:
 
1.  IMHO, you have received some very good input from JohnT.  AS is an option you should consider.  If you can handle the psychological aspect of still having an early stage cancer then AS may benefit you in a variety of ways, i.e. (a) you may never need an more invasisve treatment, (b) if you follow the "active" part of AS seriously, even if treatment is needed at a later date it is likely that the effectiveness of the treatment will not change from the present situation, (c) while you wait you will have the advantages of QOL w/o treatment for some time, and (d) with the speed of medical progress, if and when you do need treatment it may be less invasive than if you get it today.
 
2.  With your dx you have time to make a decision...don't be rushed. 
 
3.  You should see a radiation oncologist in addition to uro-surgeons to understand and get educated on your options.  You would seem to be a poster boy for almost any treament including brachytherapy.  That option should cure you at the same rate as surgery but with fewer side effects.
 
4.  Read and get educated.  Several of the books mentioned are excellent, including Walsh on Surviving Prostate Cancer and Scholz, "Invasion of the Prostate Snatchers". 
 
5.  As others have indicated, your chances of long term survival are likely to be much higher than you were quoted.
 
6.  Consider getting a second opinion on your biopsy slides from an expert such as Epstein at Hopkins or Bostwick at Bostwick Labs; you want to be assured you know what you're dealing with.
 
7.  Be cautious when considering claims from any poster about the ease of his treatment and recovery.  You need to understand the liklihood of what happens rather than just the tails of the curve.
 
Good luck and please keep us up to date.
 
Tudpock (Jim)
Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 12/8/10. PSA: 6 mo 1.4, 1 yr. 1.0, 2 yr. .8. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643&g=1305643#m1305643

d-in-sc
Regular Member


Date Joined Mar 2011
Total Posts : 33
   Posted 5/22/2011 6:23 PM (GMT -6)   
All Thank you for the continued replies.

David G,

I'd like to take you up on the offer to share info, specially your surgeon's name and location. It would be appreciated.



Thanks,
age 50
DRE Neg
Prostate size 16cc
PSA history
5/2009 - 3.0
5/2010 - 3.1
9/2010 - 3.1
3/29/11 - 3.0
Free PSA
3/29/11 - 13
Diagnosis 5/20/11
Gleason 6
12 cores, 2 positive
left lower 10%
left mid section 10%

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 5/22/2011 8:46 PM (GMT -6)   
D - You can email me from here and once you do I will give you my number. I will gladly share my experience and what I learned from it with you. The most important thing to share is that you are currently at the lowest and most confusing stage but that things get better , a lot better, really quickly.

My surgeon is in NYC, a bit far for you but he's certainly one of the best around. His name is in my signature.

David
40 years old - Diagnosed at 40
Robotic Surgery Mount Sinai with Dr. Samadi Jan, 2011
complete urinary control and good erections with and without meds
Prostate was small, 34 grams.
Final Gleason score 7 (3+4)
Less than 5% of slides involved tumor
Tumor measured 5 mm in greatest dimension and was located in the right lobe near the apex.
Tumor was confined to prostate.
The apical, basal, pseudocapsular and soft tissue resection margins were free of tumor.
Seminal vesicles were free of tumor.
Right pelvic node - benign fibroadiopse tissue. no lymph node is identified.
Left pelvic node - one small lymph node, negative for tumor (0/1)

AJCC stage: pT2 NO MX

kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 5/22/2011 9:50 PM (GMT -6)   
d-in-sc:

Tons of good advice above. All I'll say is, take it one day at a time. Focus on what you KNOW (not what might happen, or what could have happened, or what if THAT happens), only make the decisions that you have to make - when you need to make them. And to do that, arm yourself with as much information as you can - books, websites, talk to doctors, etc.

Beyond that, I would say relax (you're saying, "Yeah right, my hair's on fire.") as much as possible. Life is good. Enjoy what you have, and plan for the future because you are going to be around for a long time.

kcragman
Age: 55; 52 at DX
March 2006: PSA 2.5
Dec 2007: PSA taken for insurance app. I did not see results until late
Jan '08 - after rejection. Their lab said PSA 4.5.
Feb 2008: PSA 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5/left side were
cancerous, 6th was suspect.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Wash DC. Doctor: Jason Engel.
Post Op: Gleason 9, stage pT3a.

riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 5/22/2011 11:12 PM (GMT -6)   
You asked if anyone here had Proton radiation and wondered about the pros & cons. I did. Cons: It is expensive and increasingly insurance companies are balking at paying for protons. Unless you live within a few miles of one of the handful of centers it requires you to relocate for a couple months for treatment. Pros: fewer side effects (that is the short version...some here will likely challenge that statement, but I believe it to be true - I also believe the long term results to be as good as any other treatment for G6 PCa) This is not much of a forum for people who choose Protons. Take your time, do your research, get various opinions and read everything that John T. posts at least twice.
Dx T1c in April, 2009 at 45 years old after recent PSA tests ranged from 2.93-3.25
2 of 14 cores positive at 5% and Gleason 3+3... 2 cores taken from a "protuberance" were "ASAP"
Proton radiation at LLMC May-June 2009
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