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Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 3/16/2010 4:32 PM (GMT -6)   
Hi everyone,
 
I'm 48 200 lbs in general good health. No high blood pressure or high cholesterol, no diabetes. I need to exercise more, but generally I'm in good shape. I was having quite a lot of arthritis pain so I went to the doc. He gave me Maloxicam and it helped a great deal. He also snuck in a PSA test... The results were high normal. I don't have the exact numbers. Three months later I had another PSA test and it was even higher. So off I go to see my buddy the urologist. I've seen him before. about 5 years ago I had a kidney stone that he had to remove. That operation was traumatic to put it mildly... I was messed up in that region for months! So he tells me we're going in there with a device that will take several 1" long pencil lead thick sections of the prostate. How many? 32 he says... I'll be asleep right? He says, bright eyed and bushy-tailed, while he blinks his eyes exaggeratedly. 
 
I get my antibiotic pills and the enemas and wait for the day. The night before I had a major panic attack. Shortness of breath just short of passing out for hours. I didn't sleep at all. All I could think about is waking up from the kidney stone operation, and the fact that no one was at my side. I had to pee urgently, and I finally lost control and blood and urine was going everywhere. And the pain, I wasn't ready for the pain. I had no idea the pain would be so bad. I somehow managed to get my enemas done, which wasn't as bad as I thought it would be, and I actually made it to the appointment. I went in and disrobed per the instructions, and I assumed the position. When the doctor came in I was visibly shaking and crying. Yeah, 48 years old shaking and crying. He told me we will do this at the hospital. Two weeks later I make it to the hospital and although very anxious I made it through the process. The recovery from the biopsy now 5 weeks ago is still in progress. I mean the area is still sore even now. But it wasn't as bad as the kidney stone operation. Yeah!
 
One week after the biopsy I met the doctor for the results. He asked me about the recovery, knowing my history. I replied "how about you tell me if I have cancer, then I will tell you about the recovery." His reply was. "you have low risk prostate cancer". My wife immediately started crying. I can feel the blood rushing from my face as I go into some sort of shock. He tries to tell us it's not as bad as it sounds. He tells us the treatment options, but honestly we didn't hear anything but you have cancer. We went to the office and I told everyone, (it's a small office of family and good friends), that I have the easiest to cure kind of prostate cancer, trying to put a positive slant on it. Then I told everyone to go home early with pay. We went home and did a lot more crying and I also got to experience pure water diarrhea associated with the stress of the news. Yeah!
 
The following day we went through the motions of living. My mind was on FULL TIME and nothing I could do would stop it. We tried to search the internet, but we were not ready. I did find a popular link if you search for (low risk prostate cancer) stating that watchful waiting is a good option. However I'm only 48... What am I waiting for? But it did help get me through the tough situation. I think it's called denial, yeah!
 
Ok here are the results.
 
PSA 4.2
32 samples, one is cancerous, and one had abnormal cells.
3+3 Gleason T1C
 
I have been married for 25 years. My wife is hot and we have sex at least once a week. She is my soul mate and we have discussed life without sex. She tells me I love you not the sex. Well I know all that, but sex is and has always been a very important part of our life together. I'm only 48, I thought we would be able to have sex until it got too gross. Meaning until we got too wrinkly! Yeah! Sigh...
 
I am young. I want to keep my ability to have an erection. I have tried to search for the treatment that holds the best odds I will not become impotent. I have tried to find up to date research results where the different kinds of radiation are compared as they pertain to impotency. Nothing... I would like to find research results for men in my age bracket for the treatment that holds the best chance I will not become impotent. Am I really the first guy to have these feelings?! Why has the medical community let us down? I have tried to ask people who should know this stuff. What would you do? My urologist... It's a personal thing, I can't help you decide. An oncologist... Laughs, no chuckles, and bounces a bit while he smiles uncomfortably and stammers, um, well, I um... What are you charging me for this visit? Yeah!
 
So what am I supposed to do. I can afford to go to Bloomington Indiana for proton therapy. It would be difficult, but we could swing it. I do have an important position with the company I founded 15 years ago. I do need to work. But I should be able to forward my responsibilities to my son for 6 to 8 weeks. I don't want to do it, but I could. It's about 150 miles from here, so I would have to stay there Monday through Friday and come home on the weekends. I don't know how much it will weaken me, so this is all up in the air. My wife does not want to be away from me for this time. 
 
I am extremely afraid of radiation. I'm reading even if I can get an erection after the therapy it will be gone completely in 5 years.
 
I can afford to go to the bahamas for HIFU. I'm pretty darned afraid of the recovery. Peeing out pieces of dead flesh makes me sick... Remember the kidney stone operation...
 
As far as I know the removal by robot or skilled surgeon still has the worst chances of impotence and incontinence.
 
I have two more weeks before I go to visit my buddy the urologist. I still have no idea what to do. My life is over at 48... Yeah!
 
Jim is sick

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 3/16/2010 5:50 PM (GMT -6)   
Jim,
Sorry to hear about your PCa. With time and maybe a different way at looking at life, you hopefully will begin to notice that your life is not over and it is just taking a strange route. Not one you would have chosen but nonetheless it is still life. I like the fact your Dr. wouldnt tell you which tx to use, as he put that responsibility on you. Please do your homework, and there are good books out there. At your age the ED should work itself out with time. Shoot, I thought I would be having sex until I was ninety, or when I was gross by your standards. Still might, who knows. Take care and keep us posted, but hopefully this will just be a major inconvience for you and not the end of the world.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 3/16/2010 6:12 PM (GMT -6)   
Hi Jim,
Welcome to HW - you will get a lot of support and information from the people here to be sure. My husband went through all this too at 48 and got the final dignosis on his 49th birthday. The feelings you have are completely normal and we had them all too... After nearly 3 years post treatment, my husband is now fully recovered and he has not lost the ability to be intimate. This is not inevitable although it varies greatly and yes it is scary, and a strong partnership is great to work through recovery or managing whatever has to be managed. People here will tell you to seek out the best possible treatment options for you and to research all options carefully. You must be a very generous boss and to be honest (just an opinion) I think what you said to them was accurate. My hubby had a higher gleeson and this meant more limited options for us in terms of options and age we felt, but we still refer to him now (3 years) as being luckily cured through early diagnosis.. some may think that is a little optimistic, but it works for us. And it simplifies it a little if we have to for example discuss the past with someone we don't want to go into extreme detail about but just make sure they get a PSA. However don't underestimate the experience you or yours (privately). It is massive one no matter how small but the situation is not hopeless. The options are great for successful treatment, all of which have risks unfortunately, but the more you feel empowered to make the decisions yourself in consultation with others, the more in control you will feel. I am the wife of someone who cannot use a computer to reassure you that your life is not over at 48 - although it feels like this for some time - the shock is overwhelming so post any questions and a bunch of wonderful people will come running to answer here.

In the meantime, Jim look through the past threads here for people with similar stats - that's a great place to start your individual research if you feel up to it. Kind regards, Lana (with CJ)
Creed_three (Lana) - with husband "CJ" now aged 52 yrs (49 years at diagnosis).
PSA (2002) 2.1. (2006) 3.5.  1 x 5% core of 12 positive at biopsy. Open Radical Prostatectomy with nerve sparing April 2007 Sydney, Australia. Gleeson 3 + 4 = 7. 2 small multifocal lesions. Contained. Undetectable <.1 PSA since: June 2007-0.01, Oct 2007-0.02, April 2008-0.02: Oct 2008-0.03, Nov, 2008-0.02, April 2009-0.03. Next PSA April 2010.


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 3/16/2010 6:25 PM (GMT -6)   
Very unhappy news, of course -- but life isn't over. Talk with a really good prostate surgeon who has done a ton of prostate surgeries. Don't worry about whether he uses a robot or does open surgery, just make sure he's super-experienced. Not sure where you are located, but given the "150 miles from Bloomington" reference, you could probably get to Chicago. There are a few surgeons there who have done thousands of prostate surgeries and are very well respected. Then talk with a radiologist -- either someone who does Proton or IMRT. Then, talk with a medical oncologist. Make sure it is one who specializes in prostate cancer. There are fewer of them than you might think. Get that doc's perspective on initial treatments. You would not initially be treated by a medical oncologist, but they have good perspective on the disease and maybe less bias when it comes to initial treatments. Tell the docs that preserving erectile function is very high on your wish list. There's nothing wrong with that! Of course, dead people can't have sex, so you also want a treatment that will give you the best chance of a cure. After you have these three conversations, you will be in a good position to select a treatment (assuming you decide to have "a treatment" as opposed to active survailance). If you don't have a copy of Dr. Strum's "Empowered Patient's Guide", you might want to get and read that too -- you will learn a lot. Hang in there -- this is a huge pain in the ass, but its not likely to kill you.


Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 

Post Edited (medved) : 3/16/2010 5:28:17 PM (GMT-6)


Chatuge
Regular Member


Date Joined Mar 2010
Total Posts : 37
   Posted 3/16/2010 6:47 PM (GMT -6)   
Jim, I just received my "news" in February so I'm not nearly as knowledgeable as these veterans-you are getting some very good advice.  If you do want to explore HIFU, check out clinical trials in the US.  There are several around the country and I contacted Univ of North Carolina-Chapel Hill which advised I did not qualify with a Gleason 3+4. They are accepting Gleason 3+3.  Don't know if I would have chosen that route anyway but it doesnt hurt to explore all options on such an important decision.  Good luck to you and yours on the choice only the two of you can make in the final analysis.
John
Age 67,married to the same one 45 years, PSA's: 10/05=2.35, 4/06=2.59, 7/07=2.94, 7/08=3.91, 10/08=4.42, 7/09=6.73, 1/10=7.68.  First 12-needle biopsy 2/09 revealed no cancer.  Second 12-needle biopsy 2/10 w/results received 02-16-10 revealed rt lateral base adenocarcinoma with approx 17% of submitted tissue involved, left base and left lateral mid diagnosed  as Prostatic Intraepithelial Neoplasia (PIN), High Grade, with the remaining 9 tissue samples ok.  My Gleason's score is a 7 (grades 3+4).  I considered HIFU clinical trials at UNC Chapel Hill however they accept nothing over a 3+3.  First appt with diVinci surgeon 3-22-2010.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4237
   Posted 3/16/2010 6:55 PM (GMT -6)   
Jim,
Your case is exactly the reason for the current flap of giving men psa tests. If they did a 34 core biopsy on all the men your age, 50% of them would have a positive biopsy, and if you were older the % positive would pretty much match your age. I hope your doctor explained this to you because it is important in the fact that most men over 50 have PC in thier bodies. It is also obvious that 50% of men over 50 never get treated for PC and very few die from it. Prostate Cancer runs the entire gamut from being very benign to being very agressive. The benign stuff (gleason 6, low positive number of cores) does not kill people, except if you have a rare varient.
Take a deep breath, because in the very worst case you might get symptoms in 15 years if you did nothing and in the best case you will die from something else in your 90s. In any event you have years before you even have to do anthing about it. Indolant cancer clusters are very common, sometimes they disappear on their own, most of the time (70%) they never progess to the point that would hurt you and some of the time they progress, but if treated the cure rate is exactly the same as if treated immediately.
All of this should be good news. The best news is that the biggest danger in waiting to do anything is that the traditional 6 or 8 core biopsy may have missed an agressive cancer. The fact that you had a 32 core biopsy and they only found one spot is an excellent indication that it is indeed indolant.
You will hear various opinions on this board, but the facts are that you have years to decide what to do with out any danger. In your case if you sought immediate treatment you would be treating fear rather than a disease. Take your time and evaluate all options. Get an opinion from a doctor that is experienced in active surveillance or look at the trials going on in AS at Hopkins and UCSF. Google Laurence Klotz and read about his studies on AS. Bone up on all the side affects of various treatments. The fact that over 50% of the posts on this forum relate to dealing with the side affects of surgery should tell you something. You will also hear a lot of things about other treatments such as radiation and seeds that are myths (the rate of impotence after seeds is much less than the impotance after surgery and does not get worse after the 2 year mark).
The basic undisputable fact is that with a low core gleason 6 every treatment option, including doing nothing results in a long life with a very small chance of any symptoms in your lifetime. In fact the results of every treatment is exactly the same in cure rate and disease specific death. You will also hear that young men should never go on AS. The facts don't bear this out as it is the type of PC, agressive or non agressive, rather than age that is the real factor in progression.
Good luck on your journey, it will be a long one and will affect you psychologically more than bodily.
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


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 3/16/2010 7:00 PM (GMT -6)   

Jim,

You have a tiny, microscopic amount of prostate cancer.

Dr James Eastham, RP surgeon and Chief of Urology Section at Memorial Sloan-Kettering (considered by many to be the leading, or one of the leading, institutions on PC), often gives this advice to new patients presenting with extremely low risk cases like yours; he says:  "Lets see what it's going to do."  (Implying to watch what is going on, collect some more data, etc., before jumping into a radical, perhaps unnecessary, aggressive treatment.)  With some lifestyle modifications during this period of watching, many men with low risk PC "live strong" with PC either for the rest of their lives or they "defer treatment' until it is appropriate/needed.

Hear Dr Eastham say this yourself on this webcast:  http://www.mskcc.org/mskcc/html/95057.cfm
 
You have no reason to rush into anything. 
 
best wishes...
 
 

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/16/2010 7:11 PM (GMT -6)   
Hello and welcome, Jim. To our little corner of the world.

For starters (and I am an open surgery & salvage radiation guy), why don't you consider AS? You had a 32 core biopsy and they only found 1 positive core? You posted that it was Stage 1, Gleason 6, and with a PSA of just a little over 4, it sounds like the makings of a non agressive cancer (of course one day, that could change over time). At your age, and with your insisting on the importance of continual sex in the manner you are accustomed to, that might not be a bad path to consider. With 32 cores, they have had a pretty good shot at your prostate. If AS is done in a responsible manner, its a very viable alternative. If things change to the negative over time, then you would still have your normal treatment options in front of you.

Sex is important to most all of us here, but with those of us with more serious levels and agressiveness of prostate cancer, sex gets moved down the list. Many of us (I am 57) go by the old rule - cancer first, incontinence second, and sex third.

But with your posted stats right now, it appears that you have all the choices in front of you. All have risks, all can effect incontinence and ED, either right away or later on, but there are many answers and possibilities to dealing with those issues.

Again, another reason to consider AS at this point. Life and sex as you know it, goes on as normal, as you continue to monitor your stats over time. Just something to think about.

Your kidney stone story put the hurt to my head, that was terrible!

Keep us posted.

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
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, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 3/16/2010 8:18 PM (GMT -6)   
One thing to keep in mind is the individual's preferences and tolerances. Nobody likes biopsies, but this gentleman seems more adverse to them than average. As I understand it, AS involves periodic biopsies, even if PSA remains stable. Just something to keep in mind--I have nothing against AS in general (an older member of my family is doing AS and it's working out fine for him now for years).

I would imagine the periodic biopsies could be standard 12 core ones, though, which would be easier to recover from. I had a 12 core done under general in the hospital and felt fine afterward. If you don't mind the indignity and discomfort, from what I gather, biopsies done with local anesthetic are not painful. (I can sympathize with this person's apprehension, though--my first two biopsies were done with no anesthetic and they were...memorable.)

Harvard Medical School: "With active surveillance, patients need regular biopsies." http://www.harvardprostateknowledge.org/node/177

Prostate Cancer Foundation: "During active surveillance, the cancer is carefully monitored for signs of progression. A PSA blood test and DRE are usually administered every six months along with a yearly biopsy of the prostate." http://www.prostatecancerfoundation.org/site/c.itIWK2OSG/b.47304/k.BBFA/Active_Surveillance.htm

With a single core of 3+3, I would be tempted to send my slides off to Bostwick or Epstein at JHU to get a second opinion. There was a guy on the WebMD board who did that a couple of years ago, and the more expert prostate pathologist declared there was no cancer present.
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


riverbend
Regular Member


Date Joined Mar 2009
Total Posts : 39
   Posted 3/16/2010 8:31 PM (GMT -6)   
Please re-read what John T. wrote above. He is so dead-on...what a great asset he is to this forum. The only thing I would add is that I hope you use this as a wake-up call and begin to exercise and eat better. I would bet a year's salary that you are more apt to die from a heart attack in the next 10 years than prostate cancer. Keep an eye on your PSA, check it every 3 or maybe 6 months...and keep researching.
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


Jstars
Regular Member


Date Joined Oct 2005
Total Posts : 489
   Posted 3/16/2010 8:48 PM (GMT -6)   
Hey Jim,

That is tough to have such a diagnosis when still in your 40s. That's too young!

Man o' man, despite all of the hew and cry about PCa being overtreated (and a lot of agreement on this site over time) I find it a little ironic that no one (OK John T did) has mentioned that just plain old Active Surveillance would be fine for you with your numbers. (The numbers look great by the way -- if that can be said of any Gleason Score).

BUT .. (and that's a big but) you sound like you would be a really poor candidate (based on perceived temperament) for such a path based on the way you've already reacted to the Biopsy and the results. You would have to be that judge of course.

I just noticed that over on yananow they keep an 'experiences' table of who has chosen what kind of treatment path with starting points and updates.

http://www.yananow.net/Experiences.html

Quite a few 'Active Surveillance' entries there. Maybe take a look see and take a deep breath .. and maybe a few more, and "Frankie says Relax" ..
Age 59, 57 at DX, PSA Aug2008 7 4 ... June2007 4.7 (BPH + LUTS)
11/2008 Biopsy: 1 of 12 cores 5%, Gleason 3+3 - Sona showed size 140+ cc (110 grams post op).
02/03/09 open RRP surgery , Nerve sparing both sides, 1 day in hospital, Day 4 first BM,
Pathology Report: All margins clear - No Invasive spread - no change in Gleason score.
02/18/09 Cath out, passed a 1cm oblong STONE within hours.
03/06/09 Started Levitra@20mg / Viagra@100mg / (04/01) Cialis@20mg -- (no effect yet 02/2010).
04/01/09, 07/07/09, 10/01/09, 01/15/10 PSA <0.1
08/09-09/09 MUSE@1000mcg (alpro ache) @500mcg -- less ache.
10/09-11/09 TrimixGel@(500/300/100mcg): 60, 70,80%,
02/10 TrimixGel@1000/300/100mcg - 80-90% - (with cialis) - just @ usefulness.

Post Edited (JimStars) : 3/16/2010 7:52:25 PM (GMT-6)


MrsGFM
Regular Member


Date Joined Feb 2010
Total Posts : 115
   Posted 3/16/2010 8:53 PM (GMT -6)   
Dear Jim:

My heart goes out to you and your wife. Your very open and honest reactions to this stressful situation are familiar to us.

My husband was diagnosed at age 50, 3 years ago. 2 of 12 cores positive - Gleason 3+3. His father died of prostate cancer so he was vigilant about watching it.

He made the choice to have robotic surgery at the University of Kansas Medical Center. He had great results, no incontinence and he regained all abilities for intimacy.

Do your homework, check out the comments on this web site and make the best decision for yourself. Communicate, communicate, communicate with your wife and try to keep your sense of humor. It helps!

Nearly 3 years out, hubby's PSA's are still .04 and we are hopeful that this was just a crummy bump in the road, but thankfully past.

Best wishes and please keep us informed.
Mr GFM's statistics:
Age 50 at diagnosis
PSA History: 10-05 1.3, 01-07 2.09
8-07 - PSA at Biopsy: 2.26
2 of 12 positive
Gleason Score 3+3 6
11-07 - Robotic surgery hospitalized overnight.
Path Report:
Prostatic adenocardinoma, Gleasons 3+3+6, moderately differentiated
Percent of Prostate involved by tumor 5%
Staging pT2c pNx pMx
Margins free of tumor - no further invasion or extension
Catheter out in about 9 days. No incontinence.
Back to work in 2 weeks
ED - resolved. No meds needed at this time.
Post Op PSA: 03-08 0.01, 10-08 0.02, 7-09 0.04, 1-10 0.04


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 3/16/2010 9:17 PM (GMT -6)   
Jim Stars, you are incorrect. JohnT is not the only one on this thread suggesting AS.  Casey, above, does also. My entire post to our new friend was suggesting that AS might be his best course of action for now with only one core positive out of 32 taken. Unless there are other factors here that we aren't privy to, it could be a very good solution for a man as young as he is (48) stating a strong urgency to continue sex without issues.

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
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, Caths #13 & #14 same time, 3/6 Cath #13 out - 4 days

Post Edited (Purgatory) : 3/16/2010 8:21:58 PM (GMT-6)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4183
   Posted 3/16/2010 9:25 PM (GMT -6)   
Dear Jim:
 
I just got to HW this evening...welcome and sorry you have to be here.  Had I posted earlier I would have advised exactly what JohnT said...though I would not have said it so well!  Dude...1 in 32 with a clean DRE are great stats.  None of us can really tell you what to do 'cause we don't walk in your shoes.  But, I can certainly tell you that if I had those stats I would run to a doc who was experienced in AS...embark on that course...and continue to live a healthy and active life.
 
And if over time you see the PC worsen you will most likely have all of the treatments options open to you and maybe some new ones.  IMHO surgery should be the last thing on your mind.  Now, take a deep breath and read John's post again...
 
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"!

Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 3/16/2010 10:47 PM (GMT -6)   
Another surgery guy here. I too in your situation would choose AS.

However if you are a worry wart, I concede you might chose some other treatment, more as a treatment for anxiety than for PCa. Such a choice is perfectly valid, because as always, only you can weigh up all the factors that apply to you, and then live with the consequences of that choice.

For me, ED is not the end of sex, it's just that the sex is different to what it was before. It's not as convenient, so the frequency has dropped off somewhat. That is a worst-case ED scenario (no nerves spared). In your case, even if you chose surgery, you would be highly likely to have nerve sparing, and a much lesser risk of permanent ED.

Good luck with whatever you decide.
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
19-month: 0.09 (maybe)
ED:
After a learning curve, Bimix injections (0.2ml) worked well. From 14 months, occasional nocturnal erections. Have "graduated" to just the pump.


t-dog
Regular Member


Date Joined Dec 2009
Total Posts : 154
   Posted 3/16/2010 10:47 PM (GMT -6)   
Jim, you need to chill a bit dude. The c word was scary for us all but your life is not over because of it and neither is your sex life. I`m your age and had robot surgery 6 weeks ago. I pee normal and I get wood at will. And unless your Superman and can use your xray glasses to see my innards you`d never know I tossed my prostate out of the game. Take a deep breath. do some quality research. this place is excellent by the way and get a team together to help your decision making. Good luck to you.
Dx at 50 in 12/09 Merry Christmas its cancer....
3 of 12 positive, right side only, psa at dx 2.6 free%14
gleason 3+3=6
routine physical, no symptoms
Da Vinci performed Feb 2k10 by Dr Marc Milsten [hes got mad skills]
99% continent from cath out, mr happy fully functional at 2 weeks out!
path showed same gleeson with no other blips other than one slight margin, organ confined 20% right, 5%left, 34grams
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 3/17/2010 5:52 AM (GMT -6)   
With John T and Tudpock and others, AS is not insane and there are some other options too, that are not well advertised. My brother is around 5-6 yrs. now since his diagnosis with a little more perhaps findings than yours, he has done AS and no change to psa numbers and is content staying normal, instead of rushing into surgery and being all fubar on his prostate and perhaps urinary and e.d. functions. One has to study up on the merits of being a reasonable candidate for AS or WW, some people are not reasonable candidates, some people are not reasonable candidates for successful surgery...not many docs will tell a patient such, but a few might and did in my case.

Option #2 (and there are others): ADT3 drugs 13 months total, quit and stay only on avodart or proscar, even for guys like yourself with low grade PCa, local guy did this with numbers higher than yours, 14 yrs. since doing this protocol, his manly functions returned very soon after quiting the drugs given and has had excellent control of PCa and can still have any treatment he wishes or continue with ADT3 in 2nd round for 13 mos., which he just decided to do(round #2) cause psa finally returned upwards. He also had 2 other biopsies done within those 14 yrs. and NO Pca was found in those (kind of interesting). This is referred to Dr. Leibowitz protocol and is an actual choice and some folks are doing this or have done this....is it insane???? Well Rick K. here I mentioned is in no rush and highly pleased in his scenario, I talked to him about 1 yr. ago.

There are other ideas and ways to consider...but they don't coming knocking upon your door and you would have to analyze them closely to decide for yourself, the docs, especially surgeons in general are going to usually push surgery and may even use scare tactics to see you get billed for their services. See a PCa oncologist and listen to their words for a real comparison and contrast, you owe it to yourself to know this beast as much as you can...before jumping into whatever. Radiation is not as scary as you seem to believe, many guys have done excellent with such and some have normalcy as a man as possible reward thereafter, one has to research it all or flip your coin with whomever the doc is you go to, especially if you only get one opinion.

NOT PUSHING ANYTHING....openING YOUR EYES TO THE BIZARRE WORLD OF PCa...LOTS OF CHOICES...LOTS OF CRAZINESS, LOTS OF UNCERTAINTY, LOTS OF UNKNOWNS.  MAYBE SURGERY IS EXACTLY WHAT YOU NEED- I WILL BE THE LAST ONE TO TELL YOU GO GET IT, THAT IS YOUR HUGE DECISION...IT IS A ONE TIME EVENT!!

Post Edited (zufus) : 3/17/2010 8:08:46 AM (GMT-6)


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 3/17/2010 8:30 AM (GMT -6)   
Jim,

Hey buddy, hearing the "C" word applied to yourself is very scary and we all understand the big downer. No one who hasn't heard "you have cancer" from the mouth of their health care professional can really understand.

However, your pathology looks good and a huge percentage of us go on to live happy lives. In fact, studies have shown that prostate cancer survivors are happier than the general population.

There are links frozen at the top of this forum with information that will help you understand more.

Your job now is to find the treatment options that are best for you. None of us can decide for you what those options should be and we should not be pushing you in a certain direction.

You may wish to get two or three opinions from other health care professionals about your case.

Read the posts in the forum, ask questions and make your own decision.

Best regards,

Barry
Surgery: Da Vinci; July 31, 2007; 54 on surgery day;
Pathology: PSA: 4.3; Gleason: 3+3=6; T2a; Confined to Prostate;
Post RP PSAs: 09/07 <0.04; 12/07 <0.04; 03/08 <0.04;
06/08 <0.04; 12/08 <0.04; 06/09 =0.06; 09/09 <0.04;
Latest PSA 12/09 =0.05


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 3/17/2010 8:41 AM (GMT -6)   
Well said Barry. Get with your team Jim and hopefully you trust them. We can relate are own experience but you have to take all the info you can get and make your own choice. We are here to support you and to relate are own experiences to you and how that might apply to you.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
2 pads per day, 1 depends but getting better,
 started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10, Completed 39 tx at 72 gys on 3/12/10
Great family and friends
Michael


jacketch
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 3/17/2010 8:48 AM (GMT -6)   
Prayers go out to you and your wonderful wife.

p.s. Old wrinkly sex is just as good as young toned sex. yeah smilewinkgrin
63 yo
V10.46 Dx Feb-09

RRP 5-5-09

No adverse SE

PSA 6-19-09 -0-

PSA 9-21-09 -0-



Thriving, not just surviving!


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 3/17/2010 9:29 AM (GMT -6)   
Jim,

All the stuff going on in your head right now will not help you with the decision you have to make. Here is what I thnk you should do. Take that hot and lovely wife of yours and go away for a week. Don't take a laptop. Just go somewhere both of you like and spend some down time. With 32 samples and only one with a Gleason 6 you have plenty of time. I had only 10 samples with one a Gleasin 6 and I was told I did not have to make a decision for a year. I could not mentally live with it that long and maybe you cannot either but going away will really help. The next day after I found out I had cancer we left for a week to the beach which we had already planned. I am glad we did go as that was one of the best weeks we ever had together and really helped me get past the anxiety. When we got back I was better focused and analytical. By the way, the only radiation treatment I considered was the proton beam. I have two old high school buddies that went to Loma Linda and had the treatment. Both of them sustained their potency.

May peace and comfort find your wife and you.

Tamu
Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06, 6/25/07, 1/8/08
No more pads as of 1/13/07
Began injections in April '07
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 3/17/2010 9:49 AM (GMT -6)   
Jim:

Give yourself a bit of time to process all of this. Talk to you Dr. and get second opinion let the Dr. know exactly what you are thinking. you may even want to copy you post here and bring it with you. Let the Dr. read what is written about your concerns. Many times when we get face to face with the Dr. we go blank and forget to ask all the questions. Start making your list. Bring the list with you to your Dr. visits. Even after 17 months I still bring short list with me to my Dr. visit to make sure I ask all the thinks on my mind.

Best of Jim and please do keep us posted.

Cajun Jeff

Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 3/17/2010 5:58 PM (GMT -6)   
Jim,
I was 48 and two weeks when I had my surgery. It is tough, but I'm doing fine now. Meds for ED are good. Email me. these guys are right on when they say you do not need to rush into anything.
Even I was told with my stats that 40% of men my age were running around with the same stats and had no idea. Yeah, don't panic, you're in a position to take your time and make some decisions when you are not under stress.
Paul
www.franktalk.org ED website for PCa guys

46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
Two year PSA - undetectable!


deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 250
   Posted 3/17/2010 6:59 PM (GMT -6)   
I think everybody has said about everything that could be said for my 2 cents i'llsay stop smell the roses because there is alot to consider but the guys here i think probaly know as much as the docs .
Peace be with you and the misses
DEERHUNTER
dx age 57 01/06 open RP 4/06 psa in 01/06 8.1  surgery path report Gleason 3+4=7 poorly differentiated  tumor was 90%involved in both lobes surgical margins postive. in the right apex and right radial margins tumor grade G3  perineural invasion present high grade of PIN found  T2c NX MX PSA 0706  .01 10/06 .02 01/07 .03 04/07 .04  06/07 .05  07/07 .08 07/07 bone scans pelvic ct neg. 08/07 proscintic scan neg.9/07 psa.10 net with rad onc. wanted to do SRT but i did not do it 10/07  saw a new dr at Emory University [my old dr urg. suggested second opinion ]  bone scans negs ct scans pelvics neg. biopies of the bladder and adrinal glands neg.another proscintic scan neg.12/07 Psa .11 clinial trial Emory injected with protons to try and find the cancer cells no luck 3/08 psa .17 06/08 psa .23 psa 09/08 psa .32 12/08 psa .39 3/09 psa .39 6/09 psa .43  meet with medical onc. he said  i might have waited to long to start SRT 7/09 psa .50  another bone scan ct scan all neg.MRI neg. meet rad. onc. 7/09 started casdex 50mg 1 day for 30 days 2 shots of lupron started rad treament 10/09 40 treatments 75 gm 12 shots each time all aroud pelvic finished 12/09  psa .07 and psa 01/10.05 next dr visit 03/10 wait and see!!!!!!


Jim is sick
Regular Member


Date Joined Mar 2010
Total Posts : 118
   Posted 3/18/2010 5:07 PM (GMT -6)   
Wow, I didn't expect anyone to post, but over 20 replies. Wow... I appreciate everyones replies!
 
I will try to answer everyone... gulp.
 
60Michael 
I appreciate the comment about my urologist not wanting to tell me what to do. But my problem is I'm trying to weigh all my options. At least one option would be to do a procedure he is good at. I am asking him for his opinion on what treatment he provides, and if it would be best for me. To be fair my last appointment was pretty convoluted. I will try again when I see him in a couple weeks. Thanks!
 
creed_three
I am very lucky to have a long time partner that I have no secrets from and who would do anything in the world for me. I know whatever the future brings the two of us will work it out. I do take care of the people who take care of me. Medical exceptions aside I sleep well at night. :P I will try to read others experiences. For a tech savvy business owner, I read slowly and type even slower. lol Thanks!
 
medved
I'm sorry to hear of your father dying from this. My dad is in his 70's and has an enlarged prostate. I thought this was to be my path but alas no. I guess that's why I took the news so badly. I KNEW I didn't have it. I will check out the book! I'm in the Peoria IL area. Thanks!
 
Chatuge
We still have 20 years to match your long marriage. :) I'm not sure HIFU is right for me, but I'm not taking it off the table yet. Thanks!
 
John T
Wow this was a good post. The doctor went into great detail as to how there is a very small chance I would die from this. Stated something like 17%. there's a lot of numbers flying around my head. He did tell me one treatment is to do nothing. Meaning AS, but he immediately started dismissing it because I'm too young to do it. He's telling me that option is only for old people. Then he began to tell me how bad it is to die from this. Slow and miserable death were his words.
 
As for symptoms, I do have some symptoms though. Before the biopsy I was on nothing. I was up at 4am regularly for a pee and in the daytime I go every 1-2 hours. I don't think my bladder ever got full. Sometimes urgency when I got to work (20 minute drive) I even noticed some bowel movement issues, have to go three times about two hours apart to get the job done. After the biopsy I asked for and received flowmax. It helps with the urination urgency a lot. And my bladder is filling before I have to go. But I still feel sore or touchy down there, (6 weeks from biopsy) and I still have to get up at 4am. If these are not from the PCa then could it be part of the enlarged prostate problem my dad has? See comments to medved. Sorry for bouncing around. But I'm on flowmax and the doc told me it would prevent ejaculations from making it out. It's not doing that for me. It's like the prostate is really swollen and squeezing everything around it. :( I hope you are right! I hope this could just not be a problem. Thanks!
 
Casey59
"Lets see what it's going to do." I like this! Thanks!
 
Purgatory
I hope I didn't offend the more seriously ill here. I was just whining I guess. Yes, life, then continence, then sex.
As for AS I dismissed it due to advise from my urologist. I am getting the trend here though. ;) Thanks!
 
Galileo
Good idea on the second opinion. I will look into this. I'm not opposed to an annual biopsy, if it means a normal life. I think I will get less anxious as I go... I hope. Thanks!
 
riverbend
Yes, I have read this entire thread many times. I'm glad I did this. Thanks!
 
JimStars
I will check out the yananow site. I found it before but settled on posting here. I'm getting tougher I think. Thanks!
 
MrsGFM
I wanted to get it off my chest so to speak. I saw no benefit  to hide anything. I will keep in touch! Thanks!
 
Tudpock18
I'm very interested in SA. Thanks!
 
Piano
I appreciate the comments. Thanks!
 
t-dog
I'm chillin'. I know I know I need to relax more. Thanks!
 
zufus
You have given me much to think about. Thanks!
 
IdahoSurvivor
I will check out the links you recommended.
 
Jacketch
"p.s. Old wrinkly sex is just as good as young toned sex." I was hoping someone would say that. I hope to test this theory. ;) Thanks!
 
Tamu
corvetteman3
Paul1959
deer hunter
I ran out of time. I'm a fast thinker, but a slow typer. I thank you all again.

Post Edited (Jim is sick) : 3/24/2010 1:30:33 PM (GMT-6)

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