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nctraveler
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/12/2009 1:18 PM (GMT -6)   
Hi guys,
 
new member of the club!!!
 
Been lurking here for ~4 weeks, so you have all already been a tremendous help to me in my education process and I want to express my heartfelt thanks for a place to get information from people who have actually been there.
 
here is my tale so far-
age 57; family hist - (all mom's side)gr uncle died PC 1972 @75; 2 uncles dx PC 1990 @60 & 62yrs  - 60 died 08 other causes, 62 still living
PSA - 4/07 1.8;  10/08 2.1; 5/09 3.4; 6/09 2.9; 10/09 3.1
biopsy 10/09 gleason 6 (3+3), 2 of 10
 
presently scheduled RRP for 1/10 at Mayo, but diligently studying everything I can learn about it  and very open to other possibilities.
 
 
From the information that I have read on the different treatment options, it looks to my unpracticed eye that most of the treatments offer similar results for early stage, and that they all do pretty good.
 
I found this on the Johns Hopkins website on early stage PC -
    "Among these men, there was no increased mortality compared to men in the general population. "
 
Question - are these good results because that for early stage, the prognosis is good even if you don't do anything, or because all of the more common treatments actually do work pretty well?
 
After getting input from several guys that have PC, (all early stage),   it seems that the ones that have had proton are the happiest with their total outcome. 
 
If most of them do work well, is there a good reason not to look at proton with lower side effects?
 
I have not been able to uncover much "independent" reasearch on proton beam, but did find this on web MD -
 
thanks in advance for anything that you think might be helpful to this newbie...
 
 

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 12/12/2009 1:27 PM (GMT -6)   
I think one of the biggest problems with proton is the availabilty of it. By all reports, it is an excellent treatment option, but travel to Loma Linda, or other places is required.

Overall, i would say that you have ample time to find the treatment option best for you, and then go for it. Your realtvely low PSA and G 6 are certainly good numbes to have. Brachytherapy would also be a good option for you as well. You can pick from any of the options and have high probability of success.

Welcome to HW.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


nctraveler
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/12/2009 2:01 PM (GMT -6)   
thanks for your thoughts Goodlife,
 
did you mean brachy by itself, or with beam also.  Another friend had prostrcision and is happy with it.
 
nc

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 12/12/2009 2:42 PM (GMT -6)   
Good luck with the decision process. We are all here for you offering support and attempting to answer questions you may have. Many have been in your situation with good numbers and have traveled the road ahead of you. My numbers were just a bit higher. Gather as much info as you can then make the decision that fits you. Best of luck in your quest.

Jeff T
Cajun Country
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
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/12/2009 2:53 PM (GMT -6)   
Where is the rest of your pathology info, maybe percentages, and other data might be that you are somewhat closer to indolent PCa than you might know and if so....it might actually be more reasonable not to rush. My brother was diagnosed with the parameters from Hopkins that defines indolent level and has done nothing for 5 yrs. and psa never has moved, even went down like .1 or .2 less from his low 1.2 or so less when diagnosed.

You have likely alot of options so you might as well know them up close and personal like.

Best to you

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 12/12/2009 3:07 PM (GMT -6)   
We are happy that you found us but sorry that you are here.

With your statistics there are lots of good choices. You will see that I am a surgery guy but at age 55 my brother had brachytherapy (no other radiation) Five years later he has PSAs at zero and says that any ED issues are handled by Viagra.

The link that you gave leads to a page not found. But I think that the issue is that treatments for early stage PC are very good. They are so good that our attention turns from cure to side effects and that is a much more difficult to predict situation.

Here you will find encouragement for second and third opinions -- good doctors will find this a very reasonable thing for you to do -- so perhaps at least a radiation specialist. On the other hand, since you have scheduled surgery perhaps you are looking for support in that choice. The group that you find here does not have any single right answer. Whatever your choice you will find us behind you.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 12/12/2009 3:50 PM (GMT -6)   
One of the concerns some people have about proton is the absence of sufficiently rigorous published long term outcome results from Loma Linda (which is the only place in the US that has been doing this long enough to have long term results). There are some other places that do this, including Jacksonville, FL and I understand University of Pennsylvania is starting one too, though I dont know when it will be up and running. If you are interested in proton, you might want to read You Can Beat Prostate Cancer, by Robert J. Marckini. But it is very pro-Proton, so just keep that in mind.
Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


zachattack
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 12/12/2009 5:09 PM (GMT -6)   
Welcome to HW.NC you have found the right place for info.Best of luck to you.

Zach
age 55dx 12-2008,psa at biopsy 8.6
biopsy 12/12 gleason 3+4=7
da vinci surgery 6-09 by DR. John W. Scott (my hero)
Hospital 3 days cath 7days still leaking from cough(bad lungs)
still have ed may be the hormones.
9-09 psa 2.2 hormone inj
10-09 nuclear bone scan no results yet I will have gold markers placed 12-29-09
start rad 1-10-09
organ confined
extracapsular seminal vesicle involvement
lymph node involvement


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/12/2009 5:10 PM (GMT -6)   
Hello New Friend, glad you found us, sorry you need to be here.

Bad news: you have prostate cancer.
Good news: with your iniital stats, you are fortunate that you have the full range of primary treatment options open to you, assuming there is nothing in your personal medical history that would change that. I notice we are the same age.

You have been giving good advice above, can't add much to it. The proton way is more about limited availability.

Have you looked into Seeding without/with IMRT added?

I went straight to open surgery myself, but my PSA, Gleason, and velocity were way more agressive than you are at.

Please keep us posted, and ask all the questions you want.

Its a good brother hood here, we watch out for one another

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 12/12/2009 6:28 PM (GMT -6)   
Traveler,
PC is either agressive or non agressive. That's why the treatments for low risk PC show similar results and cure rates between the best institutions and the local hospitals are similar. Also why the cure rate for immediate treatment and delayed treatment is also the same.
The basic stats are as follows: 70% of low risk PC will never progress. 30 % will progress slowly and if treated on signs of progression have the same cure rate as if treated immediately, about 3% of low risk PC is agressive and will kill you in 5 years regardless of the treatment; this will manifest within 6 months as psa rises quickly.
Now, what are your options:
Have treatment now and live with the side affects, but will know you have an excellent chance for a cure.
Wait and see if the PC progresses and get treated then and have an excellent chance for a cure or it may never progress and you avoided all side affects.
If you get treated you have the options of surgery, seeds, external radiation, HIFU, and cyrosurgery. All have the same cure rate in low risk PC, but all have very different side affects. You will have to research and see what side effects you want to live with.
In any case, the odds are in your favor that you will live a long prosperous life regardless of what you do.
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


nctraveler
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/14/2009 11:10 PM (GMT -6)   
Thanks for all the welcomes and support...
 
Zufus,
 
my biopsy was 11% & 16%. My uro at Mayo, Dr. Blute, after looking at the Mayo path rept ( this was my second opinion) definitely did not want to wait any longer than January to do something. So that is why I am trying to reach a final decision now.
 
At this point I am leaning more and more toward canceling the RRP next month and trying the proton in fla (there are 6-7 places where it is available now.  It seems that the vast majority of opinions that I have found on it show as good or better prognosis with proton as the other options with significantly less IC and ED.
 
geezer99,
 
thanks for letting me know about the non-functional Johns Hopkins link - I guess I garbled it somehow.  I think this will work - 

http://www.johnshopkinshealthalerts.com/alerts/prostate_disorders/JohnsHopkinsProstateDisordersHealthalert_631-1.html

 

the quote that I noted in that article was this -

 

"The researchers noted that two-thirds of the men were diagnosed with well-differentiated or moderately differentiated localized/regional cancers. Among these men, there was no increased mortality compared to men in the general population. "

 

And I take this to mean that for lower grade cancers, any of the treatments have very high success rates. 

 

John T,

 

I think that that is the point that you were making in your helpful post for me?

 

And if all work well, why not the least problematic on IC & ED?

 

Medved,

 

My wife has the Robert J. Marckini book in hand at home( I am traveling now and won't be home till Wednesday) and she was reading it to me over the phone and she is totally convinced that it is the way to go.

 

Again, thanks to all of you for your thoughts...

 

                 

 

 


age 57; family hist - (all mom's side)gr uncle died PC 1972 @75; 2 uncles dx PC 1990 @60 & 62yrs  - 60 died 08 other causes, 62 still living
PSA - 4/07 1.8;  10/08 2.1; 5/09 3.4; 6/09 2.9; 10/09 3.1
biopsy 10/09 gleason 6 (3+3), 2 of 10, 11% & 16%


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 12/14/2009 11:58 PM (GMT -6)   
nctraveler,
Welcome to HealingWell. Your tale is one for all of us to learn from. You have a very early diagnosis but with extensive prostate cancer including an aggressive form in the family genes. Some might argue that you can do nothing at this point given your numbers, but I wouldn't if presented the same situation. Out of curiosity do you know what the treatment regimens were for your uncles? I believe there are now 6 PBT centers in the US. They don't have data of better survival rates, but they do say the side effects are less than other forms of radiation.

After surgery, I had IMRT radiation and so far neither radiation nor surgery has cause major side effects felt by others. Lucky I guess.

Welcome again...

Tony
Prostate Cancer Forum Co-Moderator


JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 12/15/2009 10:55 AM (GMT -6)   
nctraveler,
 
Was recently in your position. Since I live in North Florida, I am familiar with the Proton Therapy device available in Jacksonville. My stats made me open to all the options you are. I found it interesting that my urologist told me that if I decided against surgery, he recommended BT and/or IGRT rather than Proton. His reason was (as someone has already pointed out above) that there is just not enough longer term data out there yet to assess outcomes compared to the other options. I'm not making am arguement against it....just pointing out something for you to consider. 
 
 If you have to visit a site for PC, I'm glad you found this one. The collective knowledge and experience here (excluding me....I'm still a relative newcomer myself) was a big help in making my treatment decision. Best wishes on whatever option you decide is right for you.
 
Joe
 
___________________________
 

Age -67 PSA - 4.5 Gleason 3+3=6 Ct and Bone scans negative

Biopsy - Positive in 5 of 8 cores. In those 5 cores, 5 of 11 samples were positive

 

BT performed on 12/11/09. 84 seeds of Palladium 103. Surgery at 7:30 - Home at 12:30 same day with no catheter. Side effects as expected -  some burning, frequency, urgency, blood in urine which has subsided. Resumed daily walking yesterday.

 

BT will be followed in 2 months with 25 IGRT treatments. 

 


mvesr
Veteran Member


Date Joined Apr 2007
Total Posts : 823
   Posted 12/15/2009 7:20 PM (GMT -6)   
Hi

Sorry you had to come be with us, but glad you are here. Does the NC mean you are from North Carolina. I had open surgery so there is nothing to fear with it. Good luck to you in whatever you decide to do.

Mika
age at dx 54 now 57
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
two years of zero's


nctraveler
New Member


Date Joined Dec 2009
Total Posts : 5
   Posted 12/16/2009 9:58 AM (GMT -6)   
 
I'm not sure on my uncles' treatment - only recently found out that they had PC.  I am going to find out more when I talk to the younger (age now 79, dx 60) when I am there again.  I do know that the older (died last year of other causes @80) refused radiation for PC in his last 2 yrs. 
 
 
 
thanks for your kind thoughts.  I, like you, am very thankful that my numbers hopefully allow many options with good outcomes
 
 
 
 
Yes, I grew up in western nc - still love the area - hiking and boating!!!!


 
age 57; family hist - (all mom's side)gr uncle died PC 1972 @75; 2 uncles dx PC 1990 @60 & 62yrs  - 60 died 08 other causes, 62 still living
PSA - 4/07 1.8;  10/08 2.1; 5/09 3.4; 6/09 2.9; 10/09 3.1
biopsy 10/09 gleason 6 (3+3), 2 of 10, 11% & 16%


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/16/2009 11:43 AM (GMT -6)   
Welcome to the club, hate to have you here. The rest have covered the greetings spectrum, so I'll just say settle in and stay a while...
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN

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