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Posted 6/1/2009 5:06 PM (GMT 0)
First my former employer and current provider of pension & health care goes belly up (GM), then my URO gives me the bad news:

1 core of 12 positive for PCa. 10% of core was positive. Gleason 6 and stage T1c. I'm 59 (almost) and in great health otherwise (I've ridden my bicycle 3500 miles this year.)

I have lots of good feelings about my small town URO. He doesn't like watchful waiting at my age. He used to do the surgery, but not anymore, so I was a bit suprised when he said radiation was still a viable choice along with surgery. I'm already leaning towards the knife, but will wait awhile before deciding. The surgeon of choice in this area is Dr David Hollensbe of Indianapolis. Any info on him is appreciated.

If I were to go the radiation route, I'd check out the Dattoli Clinic in Sarasota near where we spend the winter months.

Next step is a bone scan on Thursday. Maybe kind of strange but I feel almost a relief to know what's what and not be worring about the next biopsy.

Mike
Posted 6/1/2009 5:29 PM (GMT 0)
Hang in there on that pension Mike. it ain't over yet. And on the cancer, if you were going to be diagnosed with it, you have favorable numbers. Hang in there buddy. There is always hope. i believe you will be fine.

Peace,

Tony
Posted 6/1/2009 6:22 PM (GMT 0)
Mike- maybe you should not rush at this juncture (your choice). My brother was diagnosed with stats similar to yours, he has only monitored his for about 4-5 yrs. now and no problems, nice to stay intact and normal for as long as possible.(yes, risk envolved but low stats patients can have some of that luxury)

Secondly, a guy named Rick K in Michigan here was diagnosed about 14 yrs. ago now, with low stats and did ADT3 drugs only on his case (i.e. see Dr. Leibowitz protocol), after 13 months dropped the drugs and stayed on proscar for maintenance. His manhood and normacly returned months after doing these drugs, he got rebiopsied 2 new times and nothing was found, went 12 yrs. with no change, then psa went up slightly above 1.0 range, so he just resumed 2nd time around with ADT3 and will drop it after 13 months. No he is not cured, he could still get major treatments too, the big thing is all the years of normalcy-about 13 yrs. (urinary, sex, continentcy, etc.).

Thirdly, if going to try and rid yourself immediately of PCa (which is not 100% guaranteed-"ever"). Yes, Dattoli is great place to consider and has good track record and you probably would have continency and handle the effects well. If you go surgery make sure you look for experience over the methodology (robotic is great, make sure the guy is an expert and not a newbie on the block). Ask alot of questions so as to know what you are signing on for ahead of time.

Fourthly, after whatever you chose to do drink good beer and say 'forget about it'. (LOL)-well kidding of course, we never can totally forget about it with PCa.

Peace and Health to You -  (a bone scan with your stats is probably a waste of time and insurance money, not my assessment but even from well educated onco-docs) I would be amazed if you had a positive bone scan. Mine was clear with these stats:  bPsa 46.6 12/12 biopsies 75-95% cancerous in every stinking one on them, gleasons 7,8,9's found and had total urinary blockage (2002 Dx), bone and ct scans showed clear  (they are not definitive enough anyway-fyi)

Posted 6/1/2009 7:15 PM (GMT 0)
Zufus,
My URO said as much about the bone scan. His reasoning is to provide a baseline for future problems.

I have two friends who were treated at Dattoli and both had positive experiences. They are however 20 to 30 years older than me.

The surgeon I'm considering has done many hundreds of robotic procedures according to my URO. I plan on talking to him and a radiolgist before deciding anything. I agree with you that I could probably wait awhile before going ahead, but as my URO said, with my possible lifespan of 25 more years, I need to hit this thing before it advances. Maybe it never will, but the question is, do I want to take that chance?

I'm looking in the frig for that beer.
Mike
Posted 6/1/2009 8:07 PM (GMT 0)
Greetings, Mike. Lots of choices as you are well aware. My thinking was similar to yours - why take a chance. Let's just get it out of there and be done with it. My doc also says the younger you are the better your chances with incontinence and impotence issues. Both have turned out fine for me. Whatever you decide don't look back. Make your decision and go with it with confidence - you will do great. Welcome to the forum that no one wants to be in. David
Posted 6/1/2009 8:07 PM (GMT 0)
Hey GMike,

My numbers were even better than yours ... one core in 12 and 5%.

But I had a big whomping enlarged prostate which was a nuisance (110 grams at post surgery). So my treatment options were limited to open surgery.

If not for the BPH I would have just watched and waited (ok Actively Watched) til the cows came home for sure. And who knows, they (the cows) might have come home with a miracle pill in the coming years. They kind of have em now (experimental treatments), but they don't quite get ALL the different PCa cells -- tough buggers even if they are slow growing.

After 116 days post surgery my IC is long gone. I am back to playing beach Volleyball at work and at Hampton Beach, NH (that is 6 hours on and off Vball in a day at the beach). Just like old times. ED is a battle but the Pump is a big help for now.

Keep on, keepin on ...

jim
Posted 6/1/2009 8:10 PM (GMT 0)

Hi Mike:

I think zufus' post was excellent.  FYI, I have pasted in the Johns Hopkins guidelines for their "expectant management" program (aka watchful waiting aka active surveillance).

Eligible men should meet the following criteria:

  • older age -usually men in their 60’s or those with other health problems
  • cancer can not be felt on digital rectal examination (referred to as stage T1c)
  • PSA appropriate for prostate size meaning that the PSA density (PSA divided by ultrasound determined prostate volume) is 0.1 or less
  • combined Gleason grade or score is 6 or less and no more than 2 biopsy cores contain cancer and
  • cores containing cancer should not have more than 50 percent involvement with cancer

You're pretty close on their criteria.  You might consider calling Dr. Ballentine Carter, head of Adult Urology at Hopkins who runs this program, to see what he thinks about your situation.  With all of the recent studies indicating that PCa is often treated too aggressively, you might want to at least consider this approach.

Dattoli is an excellent choice for radiation...I spend winters in Naples and strongly considered going to Dattoli except that I had decided to get things taken care of "up north".

In any case you should absolutely do what you are doing, i.e. consult the experienced surgeon as well an an experienced radiation doc.  You should also consider talking with a prostate oncologist who should be totally unbiased re your treatment plan.

Most of the guys on this site have opted for surgery and, if that is your choice, you will get plenty of advice from them.  If you consider brachytherapy, I have been very happy with that choice...though I'm only 6 months out.  You can check out my "journey" in my link below or I also advise JustJulie's Brachytherapy Journey on this site...her hubby is happy several years post procedure.

In any case, please let us know how you are doing, what you decide and how we can help,

Tudpock

Posted 6/1/2009 10:10 PM (GMT 0)
The odds below are from the Johns Hopkins web site. They correspond to my present condition. If you plug in rising PSA or increased Gleason they get much worse. The problem is--who knows what future numbers I will have. Nobody has data on very long term probabilities. Radiation is even harder to figure because of recent advances, the old data doesn't seem to me to be of as much help. My URO said he would hook me up with a medical oncologist but he didn't think he'd be of much help in deciding which road to take. He said the oncologist was better at managing care for advanced PCa where drugs and such were involved. (As I remember it. Trying to take in a lot of info at one time.)

Partin Table Lookup
++++++++++++++++++++
Organ confined: 83% (81-85)
Extraprostatic extension: 16% (14-17)
Seminal Vesicle Invasion: 1% (1-1)
Lymph Node Invasion: 0% (0-0)

Probability of Biochemical Recurrence
++++++++++++++++++++++
(detectable PSA level) at
3 years after surgery: 2% (1-6)
5 years after surgery: 3% (1-9)
7 years after surgery: 4% (1-13)
10 years after surgery:5% (2-17)
Posted 6/1/2009 10:59 PM (GMT 0)
Gmike, my situation and data are pretty close to yours, except for the bike thing. I watchful waited for a year and would be comfortable doing it a little longer if I could figure out what I was waiting for. I guess if you wait, a better procedure might develop, or if you wait it might grow. Hard choice. The waiting seemed to be hard on the wife so I am made the serg date, it was somewhat of a relief, I really didn't like the unkown. Now we learn about pads and ED. This board has been helpful.
Posted 6/1/2009 11:18 PM (GMT 0)
Mike,
I have a very good friend in Indianapolis and his surgeon was David Hollensbe. My friend, Mike, has nothing but highest praise for Hollensbe. He was continent within two weeks of surgery and had erections 11 days after surgery. My friend would love to talk to you. He was 44 at diagnosis and took me through my whole process step by step. It was a huge help. To sit down with someone and have a cup of coffee and help sort out all this stuff is really helpful. Please email me and I will send you his contact info. You won't be sorry. He is a great guy.
Paul
Posted 6/2/2009 1:30 AM (GMT 0)

Mike,

My stats are similar to yours and we all have gone through the "what shouild I do" dilemma. I am also an avid cyclist and was going to ride in a group with the Tour this summer until,of all things, I got the diagnosis. I chose to "get it out of me" because you don't know what the situation will be going forward. With an early diagnosis there is a much better chance of getting it out before it escapes the gland. At the state of the art right now (2009) it seemed like the way to go. I do know that there is a place in Indy where they are using proton beam therapy which is getting some attention. Perhaps that is what your Doc is referring to.

Keep studying and when you decide what to do you will feel better. Then do it, and live the rest of your life.

TeddyG

Posted 6/2/2009 8:46 AM (GMT 0)
Wow. Reading your post reminds me of my experience when I first discovered that I had PCa back in January of this year. I started on my trek of what to do by seeing several specialists at Cedars-Sinai in Los Angeles (surgeons, oncologists, radiologists, etc.) and the specialists at Loma Linda for proton treatment. I also looked at CyberBlade and a couple of others. Every specialist that I went to said that they could help me and would treat me. And you know what I ended up choosing? Active Surveillance.

I was one week away from starting proton treatments at Loma Linda, but didn't feel sick or act sick, but was bugged that there was a chance that I would encounter side effects from whatever treatment I chose. I found a doctor in Marina del Rey who specializes in prostate problems at http://www.prostateoncology.com . The visit and information I received entirely changed my mind. (And I'm not trying to sell this particular doctor. Search out a doctor near you that believes that Active Surveillance can be an option and see what he has to say.)

I think you should at least consider it before making any drastic moves. My numbers were very similar to yours, even a little higher, and I learned that time is on our side when we have such a low-level numbers. I'm 53 years old.

Good luck.

Post Edited (Franchot) : 6/2/2009 2:51:29 AM (GMT-6)

Posted 6/2/2009 10:25 AM (GMT 0)
GMike,

PCa offers way too many choices, each with its own set of pluses/minuses. For me, I had already decided before there was any diagnosis that if PCa ever showed up, I wanted it physically removed. This was based on prior reading of what was available and of having had a brother and close friends that had gone through this previously. So for me, the choices were narrowed down to which type of surgery I wanted. My Uro preferred RRP in my case since the PCa was detected by DRE and not by PSA and he wanted to be able to look around (his words) better than he could with either type of lapr. I also wanted additional treatments (IMRT, ADT,...) available if surgery didn't get it all. I'm not sure how valid that is any more but it is still nice to have available. All the usual side effects but only ED is still hanging around so I've no complaints.

Take your time, keep reading/consulting, and Good Luck with whichever approach you choose,

Garth
Posted 6/2/2009 11:27 AM (GMT 0)
Interesting that Protons are mentioned. I don't know much about proton treatment but the friend of a friend had the treatment at Loma Linda and thinks its the only way to go. Of course another friend had robotic surgrey by Dr. James Peabody at Henry Ford in Detroit. He thinks I should immediately make an appointment with his doctor. The thing is I have to make my own mind up.

TeddyG: When do think you will be able to bicycle again? My Detroit friend was operated on in February and is back to riding already.

Mike
Posted 6/2/2009 1:48 PM (GMT 0)
Just don't expect the surgeon to advise radiation or the radiologist to advise surgery. This is what they do for a living.

In the end, it will be your decision based on all the info you can absorb, which is voluminous, somewhat confusing at times, and can be contradictory.

I think the facts that swayed me most were the difficulties of surgery if radiation didn't work. I chose the "get it out" option, and I am not looking back. I am just dealing with the side effects as they occur, and feeling like I had a 100 lb prostate out. My psychological health is immensely better.

Good luck
Posted 6/2/2009 1:53 PM (GMT 0)
 

  Hey Gmike, of course check out all your options. As far as Dr. Hollensbe he was the surgeon assisting during my surgery. He and a Dr. John Scott work as a team with the machine with Urology of Indiana. Had the surgery performed at Clarian North cannot say enough about those guys. Of course  Dr. Scott is who I talked to before and after, upfront type of guy, and put it all out on the table.

 The way I understand when Dr. Hollensbe is the lead surgeon, Scott is assisting him....heck of team in my book. 

 "Rip and Burn" had Hollensbe as lead during his surgery-hopefully he'll pop in here before too long.

  Good Luck!  

Posted 6/2/2009 2:35 PM (GMT 0)
Gmike,
If you get a 2nd opinion from an oncologist just make sure that he specializes in prostate cancer; there are about 30 in the US. They are way more objective than other doctors that have a vested interest in their treatments. Seeing a prostate oncologist will give you the most unbiased opinion on your particular cancer. He can also discuss the side affects and risks of all treatment options; this is an area that most urologists and radiologists downplay.
JT
Posted 6/3/2009 12:22 AM (GMT 0)
Gmike, I don’t envy your position in losing an employer and then having a negative conversation with your Urologist.   The good news is your 3+3 Gleason and having 1 core in 12 being positive.   You have options and you have time.   As you can tell by my bio I had 3+4=7 and 1 core in ten.   The dramatic difference I had was my life insurance companies were not impressed with the 3+4 and asked me to go away for two years and then check back with them.   Funny how they forget how much money I gave them the past 40-years.     I’m sure you have read all the recent tests and hypothesis being   printed at this site on a daily basis, the advancement in prostate cancer treatment   has come a long way even in the short year I have understood   what prostate cancer really is and how it effects us. My advice would be if you have faith in your doctor then do what he recommends.   Your biopsy gives you a good view of your condition but only a post operation pathology report give you the real situation that you face.   I was not at all impressed with the 10 year 99% survivability I was given, I’m going for 30-years and I am actively and aggressively striving for that mark, you should consider nothing less.     I have “zero’s”     after 10 months, am fully continent and am 99% ED free because I did not wait any longer than   prudent and I had an excellent surgeon.    I also fully realize that I am dealing with cancer and up to this time no one can second guess how it will ultimately affect my life.   It’s not whether you win or lose, but how you play the game and I vote to beat back cancer every chance we can.   Good luck with your decision and may you find peace of mind in the actions. ·          Age 61 at diagnosis ·          PSA Jan 2006 2.8, PSA Jan 2007 3.7, PSA Jan 2008 4.4 ·          DRE Normal, Biopsy positive 1 core in 10, ·          Clinical T1C, Pre surgery Gleason 3+4=7 ·          Bone scan Normal, Cat Scan Normal ·          da Vinci robotic Surgery April 30, 2008, Fremont Nebraska ·          Post surgery Gleason 3+4=7, Pathological P2C ·          Lymph nodes clear, Margins clear ·          Hospital stay 2-days, Catheter out 10 days ·          1-pad a day for 3 weeks ·          Back at work 7-days after surgery, desk job ·          Both Nerves spared, 100% with assistance of sildenafil citrate ·          Post 3 month PSA-undetectable, Post 10 month PSA-undetectable
Posted 6/3/2009 3:19 AM (GMT 0)

I read your message and felt really sorry for you having gone through it myself. My numbers were exactly the same as yours.

My urologist told me to have robotic surgery immediately. this URO trained at MD Anderson and is an expert in prostate cancer. He sent me to Vipul Patel in Orlando, FL. Dr Patel has now done over 3000 robotic surgeries and could be the best in the world. My actual pathology showed a Gleason of 4+3=7 with 40%of the prostate cancerous. I was lucky that it was contained. The moral is that intital evaluations don't always tell the whole story. My surgery took place on January 6, 2009 and 6 months after cancer was discovered. At the 4 month time my PSA is "0". I have no ED issues or incontinence issues. Look at all the options but don't be afraid of surgery. A great surgeon like Dr. Patel can save your life with minimal disruption to your way of life.

Posted 6/3/2009 11:01 AM (GMT 0)
Spisam,
Dr. Patel is one of the surgeons that I have on my list, largely because of this forum and also because I'm close to his location during the winter. When I mentioned him to my URO (who practiced in Orlando before coming to the midwest) he said he had trained under Dr. Patel and had very high regard for him. My URO, like yours doesn't think I should wait long. It's encourging to here from people like yourself who have done well with these procedures.

Mike
Posted 6/3/2009 11:40 AM (GMT 0)

Mike,

I just had my 4 month post op check-up with Dr. Patel. He is very busy but he and his staff treat you like "one of the family". Tracy is the receptionist. I stay at the Mona Lisa which is an appartment hotel on the hospital grounds. My wife and I had a one bedroom appartment during the recovery period until the catheter was removed. You have to walk at least one mile a day and 14 times around the pool is one mile. The nursing/office staff is also very accomodating during the week after surgery so being close is a must.  The hospital is like a 5 star resort and about 3.5 miles from the entrance to Disney Land. A great place to recover. I had my surgery on Tuesday morning. Dr. Patel did rounds on Wednesday morning so I was able to see him and his surgical team and discuss with him my results. I was released from the hospital on Wednesday afternoon. Cancer is never good but Dr. Patel, his staff and the hospital made a bad situation a good experience for me.

Sam

Posted 6/3/2009 12:32 PM (GMT 0)

Hey Mike, I'll weigh in one more time, then only respond if you have something specific for me.

Over the past few months, we have had several posters who have left this forum out of frustration.  They were posters who chose treatments that were "different" than surgery (e.g TFT or active surveillance).  Their frustration came from scenarios like this: 

A new PCa patient arrives in our forum and is inundated with comments from guys who have had surgery.  The surgery guys say "get it out", "the treatment is like going to a resort", "incontinence and ED were not issues for me", "you need to see the pathology to really know what is going on", etc, etc, etc, blah, blah, blah.  Then the new patient genarally jumps on the bandwagon and goes for the knife...

I'm not saying that our ex-posters frustration is appropriate or not, I'm just raising the issue for your consideration as you review options.  The fact is that treatment choice is a major decision and that surgery is the most severe choice.  As one of our posters revealed this week, "In hindsight, I would have benefited greatly had I seen and analyzed the PCRI info and statistical evidence prior to settling upon da Vinci surgery.  And I thought that I had done a lot of research   -  my fault.  Now, at 24 months post-op, with total incontinence and complete ED, I spend more time and effort (and with considerably much less joy) trying to correct the incontinence and ED than I would be spending on "active surveillance". (And he went to one of the most experienced and well known surgeons in SW Florida).

This forum is filled with posts about guys trying to figure out how to become more continent and/or how to have some semblance of normal sex.  With many recent studies showing PCa overtreatment, decide carefully...

OK...I'll probably get blasted for this, but I just wanted you give you some balance and food for thought...

Tudpock

Posted 6/3/2009 3:10 PM (GMT 0)
Tudpock,
I value your input along with the others on this forum. It is a very good resource. I'm considering all avenues of treatment at this time. I still have a lot of fact finding to do. The PCRI web site appears to be an excellent place to do research. I've already read your "Journey" multiple times and it is helpful to the newly diagnosed like myself.


Mike
Posted 6/3/2009 4:05 PM (GMT 0)
I would be interested in a report on comparisons on what the conditions are at say one week , one month, 3 months, 6 months , year for the different treatements. Just from reading the boards it appears that once you add in the lupron shots etc that the radiation treatments seem to be a farily long process. The seeds seems to be the quickest, and the Davinci somehwere in the middle. That is just what I get from reading. My URO basically told me they were all bad.
Posted 6/4/2009 3:43 AM (GMT 0)
Just to add to Tudpock's post...

All of us who hang out here have problems of various sorts. By contrast, we hardy ever see guys with no problems. So we can't judge how successful surgery is by the guys who hang out here -- we are not a representative sample.

Surgery is but one option. As has been said before, the choice of treatment is a very individual one and if you have low numbers, you have more options including watchful waiting (aka active surveillance). If I had lower numbers, I too would have chosen a different option.

In choosing the treatment that is right for you, it is a gamble -- you have to weigh the odds of good outcomes against the odds of bad outcomes, with even what constitutes "good" and "bad" differing for each of us. E.g, for someone who has no sex life and no prospects, ED may well be a non-issue. But it is entirely different for someone who has just married a gorgeous doll who wants "it" every day. :-)

You choose what is best for you at the time, and roll the dice. And having made your choice, don't look back. Don't let others tell you you made the wrong choice -- they don't know the facts.
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