I'm opting out...

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Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 4/12/2010 2:15 PM (GMT -6)   
I saw my urologist last Friday. I brought along a lot of research from here and other places. He's ok with me doing AS. I asked about the follow up staging biopsy. He said "do you really want to go through that again?" I said, "no." He dismissed it as unnecessary. I asked about the staining of the biopsy to determine if it's possibly a more aggressive strain. Sorry don't have the info in front of me. He said "there is no data to support these claims." He is basically not interested in doing things that are not proven. I see his point I guess. I discussed with him my urinary symptoms to great lengths. I will have to do some backtracking a bit...
 
I have had urinary symptoms for about 5 years. Waking once per night to go. Slow starts. Weak stream. Frequency mostly, but sometimes urgency. I knew very well my fathers BPH history so I lived with it, knowing as soon as I went down the treatment road I would be on Avadart for the rest of my life. Well if you search for my first post here you can read, my story...
 
So now I know I have low risk PCA, but it's not that simple. I know from my research that urinary symptoms before treatment are likely to still be there after the treatment. In the case of seeds they will get worse, and may or may not get better later. It's bad enough for me to be neurotic about the impotency issues, but I also have to try and make heads or tails of the urinary symptoms I am likely to make worse with treatment.
 
I have been moving away from HIFU because it retains some of the bad effects of RP, such as those associated with the removal of the prostate. The fact that you will pass some of the prostate tissue with urination.
 
I like the idea of seeds, but worry about the urinary symptoms getting worse and not being able to control them with medication.
 
I find myself back at proton therapy again and again. I don't know how I could swing 6-8 weeks in a place 4 hours from here and work too.
 
I was discussing my current urinary symptoms with him and he said "Are you sure you're not just thinking about the cancer?" Insinuating that I may be feeling things in my head, or making something out of nothing. I honestly replied "The cancer never worried me. It's the treatments that scares the hell out of me!"
 
So for the next 6 months I'm opting out of this insanity. I'm doing AS and not bothered in the least.

48, Caucasian, 5' 8", 200lb, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3.
Diagnosed: 2-12-10.
Treatment options being considered: AS, Proton Therapy, HIFU.
Mode: Learning.
Process: Reading Dr. strums book, Determine second opinion specifics.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 4/12/2010 3:26 PM (GMT -6)   
Doesn't sound like you and your URO are on the same page. Perhaps you should go for a second or third opinion and find a URO, prosate onclogist, or radioation oncologist who you feel comforatable with.

Probably six months won't be a major thing in your journey, but who can say. Just walking away from the issue for six months may be a little risky with the limited knowledge you have to date about exactly what you have.

Good luck.
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 injection
No pads, 1/1/10,  9 month PSA < .01


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 4/12/2010 3:35 PM (GMT -6)   

Jim,

Congratulations on decision made!  Time to move forward and get on with life!

You made no mention, yet, of other changes to your diet or lifestyle.  Some people initially (mistakenly) equate Active Surveillance to “doing nothing.”  To me, that seems far from the truth.  If you were to enroll in a “program” such as Klotz program, Myers program or MSK program, you would also be pressed to follow diet, supplement and lifestyle changes which are known to stop or delay progression of your tumor in order to optimize the odds in your favor.  It's not  "doing nothing"; rather, it is doing as much as practical and possible to defer very nasty forms of treatment.  As a result of these diet and lifestyle changes, however, you will also likely improve your overall health and live longer than you would have otherwise even if you hadn’t developed PC.

Keep researching!  Not all urologists are experts in AS; many urologists will find themselves learning/benefitting from empowered patients like you!

best wishes…


Post Edited (Casey59) : 4/12/2010 2:39:06 PM (GMT-6)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/12/2010 3:55 PM (GMT -6)   
My brothers stats are vary comparable to yours, he has been doing AS now for like 5-6 yrs., psa never has moved up and was like 1.0 or under, but has PCa like your show kind of near the 'indolent definition'. So maybe yours will be similar, monitor your psa's. If your pathology was not done by 'The Best', maybe have it reviewed by Bostwick, Oppenheimer types, they can do ploidity analysis and further tests and know how to identify "if" you have a weird variant strain..probably don't anyway.

Z-----


Youth is wasted on the Young-(W.C. Fields)


Bassguy
Regular Member


Date Joined Mar 2010
Total Posts : 25
   Posted 4/12/2010 4:00 PM (GMT -6)   

Hey Jim...

No real advice here...  But I thought I would chime in.  Your situation is darn close to mine.  Sounds like your concerns are similar as well.  49 with 3 + 3 = 6.  I had conflicting gleason scores from two pathology labs.  One gave me a 2 + 3 which made me feel like I had a bit of an edge.  Followed up at Sloan Kettering and Johns Hopkins and they both are giving me a 3 +3.  I also had an MRI at Sloan Kettering last week and all the news was good.  Low risk tumor, organ confined.  Yay... I'm a perfect candidate for surgery I don't want.  Anywho...  Sounds like you've done some good investigation.  I've been doing quite a bit as well.

The whole age thing is the paradox here.  At 49  (actually 50 in two weeks - GAH!) I'm really bummed out about having to choose a method to put my prostate to death.  It's operating perfectly fine...  and I really enjoy using it.

I have yet to encounter a medical professional who would support my doing AS, which has been a disappointment.  Overall I think the doctors I've spoken to want me to do the right thing and believe that what they have to offer is the right way to go, cutting, zapping, etc.  However, the conflicting advice gnaws at me...  Deep inside I know that these are business people looking to make their numbers...  And I don't hold that against them.  However it colors their advice, and I have been looking for a way to filter that.

If I could safely get another 5 years out of my prostate, I'd really love to do so.  I'd like to live a long time, but I would also like to enjoy life as well.  I am still undecided about treatment. 

My wife and I are going to sit down tonight and watch the Sloan Kettering podcast on Prostate Cancer treatments.  If you have not seen it, you might want to check it out.  It's about 90 minutes long and is a panel of physicians discussing all the latest stuff.  I believe it's from December 2009.

Good luck with your AS!

 


Age: 49, 49 dx, PSA: 5.65
2nd Biopsy: 1/10 - 1 of 12 cores positive, 5% Cancer, Gleason 2+3=5 by primary care, Upgraded to 3+3=6 by MMSK
Considering entering Johns Hopkins 2nd opinion program to square away pathology issue.
Have not decided on a course of treatment.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/12/2010 4:01 PM (GMT -6)   
Jim, you made your decision after much research and thought, and that is cool. Its yours to make alone.

It does bother me, what Goodlife said above, that you and your uro are miles apart in thinking, that bothers me too, though no one says he/she has to be your uro forever.

I think for AS to work right, you and a uro, need to be on the same page about most issues. Its an important active thing to do AS correctly as Casey states above. It's not a passive position, or at least it shouldn't be.

Hoping you the best, ahead.

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
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 out - 27 days, Cath #15 - 3/29


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 4/12/2010 4:48 PM (GMT -6)   
Bassguy said...

My wife and I are going to sit down tonight and watch the Sloan Kettering podcast on Prostate Cancer treatments.  If you have not seen it, you might want to check it out.  It's about 90 minutes long and is a panel of physicians discussing all the latest stuff.  I believe it's from December 2009.

I saw that Bassguy mentioned the MSK webcast on PC, but didn't include the link.  I did, I believe, previously provide this to Jim in this thread (http://www.healingwell.com/community/default.aspx?f=35&m=1747689), but can provide it again here.
 
I think that Dr Eastham (surgeon) has some excellent advice for patients with very small amounts of PC found, like both of you guys have.  He say that rather than jump into an aggressive treatment, "let's see what it's (the cancer) going to do."  Remember that any AS program involves actively monitoring the course of the disease with the expectation to intervene if the cancer progresses...basically waiting to see what it is going to do, and trying to actively do things to slow it down.
 
The MSK webcast can be found here:  http://www.mskcc.org/mskcc/html/95057.cfm

Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 4/12/2010 5:06 PM (GMT -6)   
Goodlife, I appreciate your concerns. I like the guy and I think he is way more knowledgeable in this than I will ever be. He is a urologist who specializes in seeds using an expensive computer system to properly calculate the number and position of seeds to be implanted. I would have to drive to Chicago or St. Louis to find someone as good. He told me to go to Bloomington to talk to them about proton therapy! Why would he do that? Because he cares about me.

I have put my future in his hands. I am very tired of this. It's a torment to my psyche. Let's fill the brain with unsolvable problems... Work on the problem without a pause every waking hour. Every night I wait till I'm exhausted to fall asleep. Every morning when I wake up my mind has to load up the crap to worry about. I've had so many mornings when I wake at 4am and do not go back to sleep because of this. I'm just tired. It's a mind f^&* and I have to get away. The only thing I will promise is to actually open the Strum book. I will try...
48, Caucasian, 5' 8", 200lb, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3.
Diagnosed: 2-12-10.
Treatment options being considered: AS, Proton Therapy, HIFU.
Mode: Learning.
Process: Reading Dr. strums book, Determine second opinion specifics.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 4/12/2010 5:27 PM (GMT -6)   

Jim,

I think you made a good choice. It's the only choice that is non permanent and you can change at any time.

I had urinary issues before my seeding; getting up twice a night, slow stream and frequency. All of these symptoms have greatly improved since treatment. I pee like a teenager and don't get up at night anymore. I think it is because my 60mm prostate has shrunk from the treatments and helped my symptoms. Go figure.

JT


64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors 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


Franchot
Regular Member


Date Joined Jun 2009
Total Posts : 131
   Posted 4/13/2010 1:24 AM (GMT -6)   
Jim,

I've been following your posts since you first posted at this site. Your stats are very close to mine.

I've been doing AS for over a year now and as others have stated you have to be active in treating your disease. My doctor has me work on three things which he believes are the most important in preventing the PCa from growing:

1) Diet

2) Exercise

3) Stress

Looking at the information in your signature, I'd guess that you are probably overweight at 200 lbs. and a height of 5'8"...unless you are a body builder. Working on improving your diet and getting steady exercise are two areas you can easily work on.

The third area, stress, is probably the most difficult due to the times we are living in. (My job is very stressful, but I've learned to just accept what is happening at work and try not to get overly involved in things when I can.) It sounds like dealing with stress may be difficult for you, also. (Especially when I read about your sleepless nights concerning your thoughts about PCa.) You have to change your mindset about your disease in order to lower your stress levels about it. You have to see that you are combating and fighting the disease and stop second guessing your decision to be on AS. (As John T stated you can always seek out other treatments if the information you gather as time goes on leads you into a different direction.)

See that by doing AS you are actually winning against the disease and that the disease is not progressing at a rapid rate. Keep getting your PSa tests on a regular basis, monitor the results, and enjoy your life each day because many people (and I can think of many people on this board) are going through much more difficult ordeals with dealing with their PCa.
Age: 53 6' 0" Weight: 170 Caucasian

Rising PSA over the last six years (from when I started being tested) from 3.9 to 5.2 to 4.6 to 4.5 to 4.9.

DX with PC in January 2009 after biopsy. Bone scan--negative

Consulted Cedars-Sinai Beverly Hills urologist--recommended surgery
Consulted Cedars-Sinai Beverly Hills radiologist--recommended IMRT
Consulted San Diego Cyber-Blade doctor--recommended treatments
Consulted Long Beach radiologist--recommended IGRT
Consulted Loma Linda radiologist--recommended Hypo-fractionated Proton treatments

Insurance approved any treatment I wanted.

Consulted Marnia del Rey urologist Dr. Scholz.
Dr. Scholz referred me to Dr. Bahn for a Color Doppler test.
Scholz and Bahn recommended Active Surveillance, some diet changes, and steady exercise.

I am currently on Active Surveillance.

Post Edited (Franchot) : 4/13/2010 12:27:06 AM (GMT-6)


Heavy Leaker
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 4/13/2010 7:28 AM (GMT -6)   
Jim is sick said...
I saw my urologist last Friday. I brought along a lot of research from here and other places. He's ok with me doing AS. I asked about the follow up staging biopsy. He said "do you really want to go through that again?" I said, "no." He dismissed it as unnecessary. I asked about the staining of the biopsy to determine if it's possibly a more aggressive strain. Sorry don't have the info in front of me. He said "there is no data to support these claims." He is basically not interested in doing things that are not proven. I see his point I guess. I discussed with him my urinary symptoms to great lengths. I will have to do some backtracking a bit...
 
I have had urinary symptoms for about 5 years. Waking once per night to go. Slow starts. Weak stream. Frequency mostly, but sometimes urgency. I knew very well my fathers BPH history so I lived with it, knowing as soon as I went down the treatment road I would be on Avadart for the rest of my life. Well if you search for my first post here you can read, my story...
 
So now I know I have low risk PCA, but it's not that simple. I know from my research that urinary symptoms before treatment are likely to still be there after the treatment. In the case of seeds they will get worse, and may or may not get better later. It's bad enough for me to be neurotic about the impotency issues, but I also have to try and make heads or tails of the urinary symptoms I am likely to make worse with treatment.
 
I have been moving away from HIFU because it retains some of the bad effects of RP, such as those associated with the removal of the prostate. The fact that you will pass some of the prostate tissue with urination.
 
I like the idea of seeds, but worry about the urinary symptoms getting worse and not being able to control them with medication.
 
I find myself back at proton therapy again and again. I don't know how I could swing 6-8 weeks in a place 4 hours from here and work too.
 
I was discussing my current urinary symptoms with him and he said "Are you sure you're not just thinking about the cancer?" Insinuating that I may be feeling things in my head, or making something out of nothing. I honestly replied "The cancer never worried me. It's the treatments that scares the hell out of me!"
 
So for the next 6 months I'm opting out of this insanity. I'm doing AS and not bothered in the least.

 
Jim,
I am posting a reply to you somewhat reluctantly as I can tell from your posts that you have a great deal of difficulty in handling your situation.  Taking 6 months off is fine as long as you don't turn it into 6 years.  Don't run away from your situation.  When I was in my hospital room after my surgery, my roommate was an 83 year old man who had gone against his doctor's advice about his prostate for many years.  He told me he hated doctors & hated hospitals & was afraid of confronting his situation.  He was in the hospital because he had pain in his hip that had gotten so bad he could not walk.  After being taken to the ER by ambulance he was admitted  3 days before I had my operation.  The next morning his urologist came in & told him that he had cancer in his hip.  It was spread from his prostate.  My father died from PCa that had spread to his bones 17 years ago.  He was not diagnosed until it was too late.  It is an awful death!   That happened a lot many years ago.  It does not happen so much anymore.  You need to educate yourself more about this disease.  Read Dr. Walsh's book.  I know you have gotten a lot of support for Active Surveilance from a lot of others on this forum.  This is probably the best thing for you to do now.  However, you cannot just forget about your problem.  I went through 4 years of biopsies before my cancer was discovered.  It was supposed to be a Gleason 6 mildly aggresive cancer in a very small tumor & it was Gleason 7 in 30% of the prostate.  Every man is different & you need to follow up on your situation for the rest of your life.  Those of us who have had surgery, radiation, HIFU or anything else will be as my uro put it "best buddies with our doctors" for the rest of our lives.  It is just a fact & you need to confront it & not let your fears get the best of you.  It is not fair but it is reality.  There are many men on this forum who have gone through very bad times  but many of us have been relatively unscathed & should be thankful to God for how lucky we are.  Don't let this take control of your life, you take control of PCa.  Active Surveilance is a tool for you to use but it is not just forgetting about your situation.

4 biopsies over 4 years starting in 2006, 4th biopsy showed 5% of one core Gleason 3+3=6.  PSA in 2005 6.0, rose to PSA 18 shortly before surgery.  Chose surgery over radiation due to conflicts in PSA versus biopsies.  PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09  T2B Tumor 30% of prostate  involving left & right lobes  NOMX Gleason 3+4=7  Urethral Resection margins &  resection surface clean Seminal vessicles clean.


rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 4/13/2010 7:39 AM (GMT -6)   
Hi Jim,

I applaud your decision and hope you will continue to post so that we can follow you. My husband is in a similiar position (gleeson6, 4.7psa, 56 yrs. old). We haven't ruled out treatyment-we're still in the reseach mode-but we are definately doing the diet, exercise, stress relief. Been doing it to a lesser level for several years but are following Dr. Ornish's Spectrum diet now that he has pc. Please keep us updated as I think all of us in this fight need to see how all the options work-including a.s.

All the best,
Renee

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 4/13/2010 7:42 AM (GMT -6)   
Jim, I hear you about going to sleep with PCa on the brain and waking up with it every day. When John was diagnosed, that seemed to be my first and last though every day - it consumed me. My husband was fine with it, and knew from the get-go that he wanted surgery assuming he was a candidate for it. Me - I heard the word "cancer" and was frozen in place. I spent hours every day researching and talking to people. I anguished over every "what if" and even invented a few of my own! Oddly for us, incontinence and ED were not deciding factors - my husband wanted "it" out and wanted to move on with his life. He felt confident that he could deal with both issues with no regrets - and he has.

If both you and your doctor are on board with AS and what it entails, then that's great. I hope that the next 6 months give you the room and breathing space you need to come to a decision that you are comfortable with.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/13/2010 7:50 AM (GMT -6)   
WIth still well over 25,000 - 27,000 American men dying directily of Prostate Cancer every year in this country, I would say it is still happening way too often. May seem like a small number in a country with a population of over 300 million, but a huge number to all those that lose a husband, brother, son, grandfather, uncle, nephew, lover, or friend to this terrible cancer.

Even one death is too many.

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
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 out - 27 days, Cath #15 - 3/29


Bassguy
Regular Member


Date Joined Mar 2010
Total Posts : 25
   Posted 4/13/2010 8:51 AM (GMT -6)   
Casey,

Thanks for getting the URL in on that podcast. I found it on iTunes so watched it there.

A great piece. I would highly recommend this to anyone facing PCa.
Age: 49, 49 dx, PSA: 5.65
2nd Biopsy: 1/10 - 1 of 12 cores positive, 5% Cancer, Gleason 2+3=5 by primary care, Upgraded to 3+3=6 by MMSK
Considering entering Johns Hopkins 2nd opinion program to square away pathology issue.
Have not decided on a course of treatment.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 4/13/2010 9:34 AM (GMT -6)   
Jim,
 
Today is my D-day.  12 months ago I had a dance with the fat lady, Ms. DaVinci.
 
I understand everyting you are saying, and wish you well. 
 
I will say that I very much doubt that a 6 month or 16 month hiatus will change your concerns about PC.  I had my 1 year PSA drawn this morning, and like so many guys on this site, even tho I have dealt with the monster, I still think about it every day.
 
I have a little more peace after having chosen a tx and done the dance, but the stress and anxiety is still there, especially whan I read the posts here about guys who have gone 1 ,2 or 3 years and had it appear again.
 
I guess in my own life, I just had to come to grips with death itself, and have reached a point where it doesn't worry me.  I live each day to the fullest, make sure I tell my wife, kids, and grandkids  I love them, and move on.  Whatever comes tomorrow, I will handle tomorrow.
 
Good luck.  I do wish you the best, and hope that you have many years of waiting before you have to deal with the beast.
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 injection
No pads, 1/1/10,  9 month PSA < .01


Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 4/13/2010 10:36 AM (GMT -6)   
Thank you all for the differing opinions, and the support! I know I'm a mess. I have my ups and downs though. When I told my doctor I wanted to do AS, he looked me in the eye and said "I've got ya!" Meaning I know your history, your weaknesses and I will help you through this. He is very good at what he does and I know he will not let me do something that will hurt my chances of surviving this. He warned against doing AS as a delay tactic. Insisting it's only for those who's symptoms allow it. We will see what happens with me. For now I'm doing the best I can. If I can get two years I will be 50. Maybe I can accept this better at 50.
48, Caucasian, 5' 8", 200lb, general good health.
PSA: 8-7-09 3.22, 11-13-09 4.25.
Biopsy: 32 cores. 3 cores reveal PCa, 10%, Gleason 3+3.
Diagnosed: 2-12-10.
Treatment options being considered: AS, Proton Therapy, HIFU.
Mode: Learning.
Process: Reading Dr. strums book, Determine second opinion specifics.


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 4/13/2010 10:39 AM (GMT -6)   

Jim, check out this link and read what noted PCa surgeon Peter Scandino has to say about treating low risk Pca....maybe you will feel better about your choice.

http://www.urotoday.com/media/presentations/auany2009/scardino_restaging_low_risk_prostate_cancer_10_27_2009/player.html

Tudpock


Age 62, Gleason 4 +3 = 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 12/09.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 4/13/2010 6:43 PM (GMT -6)   

Your choice for AS seems perfectly reasonable to me.  You did your best to make an informed decision, and you tuned out all those who peddle fear.  What more can you ask of yourself?

Zen9 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/13/2010 7:03 PM (GMT -6)   
Jim

You got my vote with your choice with your situation. Please keep us posted of how it goes
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
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 out - 27 days, Cath #15 - 3/29

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