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Hello fellows and may I ask a few questions

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Posted 12/18/2009 5:32 AM (GMT 0)

Age 55

Annual Physical on 11/10/09, PSA 4.97, DRE negative. Referred to urologist.  Saw urologist on 11/19/09, again DRE negative.  Urologist recommended biopsy "just to be sure of what we are dealing with". Biopsy on 12/2/09 with 12 samples harvested.  Got results on 12/9/09, 1 sample showed cancer in less than 5% by volume.  Gleason 3+3. T1C

My urologist said given my relative young age and overall good health that surgery would be the right choice.  But encouraged me to explore all options and decide.  I have been reading a couple of books and scheduled appts with surgeons and radiology oncologist.  The radiology oncologist agreed with my urologist that surgery was a better option for me.  He stated he would gladly treat me with IMRT or brachytherapy if that is what I decided.

Appt next week with 2 surgeons.  One for RRP and one for RALP.

I am leaning toward RALP although very latest data would indicate a slightly higher incontinence and impotence with RALP than RRP.

Numbers I am reading indicate long term urinary incontinence issues in less than 5% and long term impotence in about 50% (drugs or appliances can overcome this I am told).

Are these numbers accurate?

I feel good about the surgery decision but now.. is it RRP or RALP? hmmm

Any data and/or advice appreciated.

Thanks

RickyD561

Posted 12/18/2009 5:48 AM (GMT 0)
Welcome to the club that we hate to have people join. Your stats are very good and so you have lots of time and lots of choices.

While I am a surgery guy, In your circumstances I would investigate other choices as well. You might especially consider brachytherapy or even watchful waiting. My younger brother had Brachy at age 55 and now, five years later, has a PSA of 0.0 and reports that his only problem, ED is well solved with Viagra.

I'm not clear on why your radiologist thought surgery was better. In any case questions are always welcome here and more guys will be along with more experience to share.
Posted 12/18/2009 11:00 AM (GMT 0)
Ricky,
Do not jump the gun. Your stats indicate there is no rush to make a decision about your next step. The overwhelming advice you will firstly receive here (and all from fellas who have trod this road) is to take your time making a decision. Read the wide range of posts here and really know this disease before you commit. You will be amazed how knowledgeable you will become in a short period of time and may even come to question the wisdom of your urologist's advice. If you make that surgery decision know exactly why YOU want to go that way. Given your stats there are quite a few that would elect "active surveillance" rather than active treatment at this stage.
Bill
Posted 12/18/2009 11:38 AM (GMT 0)

Greetings, Ricky.  Welcome to the forum no one really wants to join.  You are among friends who have either been in your shoes or love and support someone who is in your situation.  As others have said, you have lots of time to research and make a good decision which it sounds like you are well on your way to doing. 

I was very similar to you - no symptoms at all other than an elevated PSA from the previous year - still relatively low but doubled in a year.  I had just turned 55 so our ages are similar.  I did have a slightly more aggressive path report but not by much.  There are lots of options and many are good ones.  You will hear from the radiation and brachy guys and they have had great success.  If you were to choose that route I have great confidence you would be successful.  I chose surgery and have never regretted my decision - it was right for me and that is what you need to do - find the treatment plan that is right for you. 

This may sound strange, but once I had decided on surgery it wasn't so much making a decision between the robot and open but rather finding the right surgeon and using his expertise.  In my case, I found a great surgeon that had done RRP a couple of thousand times and he spent an hour with my wife and I going over all the details and possible outcomes.  We came to have great confidence in him and wanted him to be our doc.  He said that he was convinced that the robot was the procedure of the future and that it wouldn't be too long before it was the primary method of prostate surgery.  However, for him, his expertise was in the open surgery and he liked to get in and look around and also he could feel better when he was doing the actual surgery. 

My results speak for themselves - no incontinence at all (I wore a pad for 3 days just in case but never really needed it) and started having erections a few days after the catheter came out.  Yes, I still leak a drop or two on occasion in certain situations and I take Levitra a couple of times a week, but I can live with both of those outcomes. 

So, Ricky, take your time, do the research, make a good decision for you, and once you make that decision press forward and don't let anybody cause you to doubt it.  Whatever treatment you choose have confidence and begin the healing process.  You are among friends here and will hear lots of good advice.  We are not trying to persuade you that our choice will be the right choice for you but rather that it was the right choice for us.  Whatever you decide will be the right choice for you.  Let us know any way we can help in the process.  David 

Posted 12/18/2009 12:26 PM (GMT 0)
Ricky, If you are still undecided and looking at different treatments, you might want to read some of Dr. Dattoli's papers at www.dattoli.com. He is a bracky and imrt specialist and has a lot of data comparing his specialty to surgery(both types) and proton beam. Of course he is biased to RT but it is informative. I used an experienced robotic surgeon but certainly would have considered RT if an experienced radiologist had been available to me.

Carlos
Posted 12/18/2009 12:47 PM (GMT 0)
After going with Davinci, I was amazed at how slow my recovery was after hearing about guys who went golfing days after surgery. Simply, it is not the technique that makes that much of a difference. Everyone is different. Every surgeon is different. Every surgery is different. As proof of how emotional a decision it is, most guys will claim that their surgeon is one of the best in the country. The fact is, you do need to feel that you are in the very best hands. Find someone you like and trust.

Just do your best to find a good surgeon. Post your stats in your signature and guys can help better - Even with doc rec's in an area.
Posted 12/18/2009 1:52 PM (GMT 0)
Ricky, Welcome, I we are all brothers in PC here. The only advise I can give you at this time is get second apinions and investigate all you options. Make your decision and never look back. You have lots of options with you low numbers.

Best of luck and keep us posted.

Jeff T
Cajun Country
Posted 12/18/2009 1:54 PM (GMT 0)

Ricky:

Sorry you have to be here but it's a good place for lots of information and lot of caring folks.  FYI, I have pasted in a couple of link to recent discussions on this forum where various treatments have been debated.  One of the threads in particular gets a little heated, but the info is still good.  The other thing I would point out right now is a recent conclusion by famed prostate surgeon, Peter Scardino, "Surgery should not be used as a first-line treatment for men with low-risk cancers or elderly men."  That alone should give you pause...

Tudpock

https://www.healingwell.com/community/default.aspx?f=35&p=1&m=1663949

https://www.healingwell.com/community/default.aspx?f=35&m=1668382

Posted 12/18/2009 2:23 PM (GMT 0)
Rick...I know that recent studies from one center indicated open surgery was better than robotic for reduction of side effects. I would caution reading into that too much as it is the skill of the surgeon not the technique that will make the difference. Regardless which direction you choose, choose a surgeon with experience.

Best of luck to you and welcome to Healingwell
Posted 12/18/2009 2:45 PM (GMT 0)
Ricky

First of all it isn't the end of the world. Your numbers indicate that you have plenty of time to decide. My PSA level was at 4.? and 2 biopsies were negative over a 3 year time frame. In year 5 when my PSA reached 10, we did a urethial biopsey and discovered a few cancer cells. Soo you have time to explore all of your options. I choose the daVinci robot and it was not a bad experience as far as the surgery went. I needed no drugs except for two Tylenol. It is my understanding that if you chose radiation therapy and the cancer returns then surgery may not be an option. That is why I went with surgery. I won't lie to you, the incontinence sucks, but I am learning that it does get better. The ED can be dealt with via Viagra as well as other methods.

You caught it early and that is a good thing. Best of luck. We are all here for you.

Len
Posted 12/18/2009 2:47 PM (GMT 0)
Rick, welcome here, glad you found us.

You realize its only been 9 days since you were diagnosis. With a single low volume core of PC detected along with your PSA and estimated staging, you have plenty of time to make a safe, educated decision about what to do. Assuming your personal medical history is pretty decent, and assuming you dont come from a family known for PC, you are in the fortunate posiition of having most every available option for treatment or non-treatment at this time.

For starters, you may well be a good candidate for WW or AS, the watchful waiting method, as your cancer may well be very minute and indolent at this point.

Assuming your biopsy was seeing the bulk of your cancer correctly, you could well be served by Seeding with/without added radiation.

Of course, surgery is there. I am biased toward open surgery in the great open/robotic debate, but aside from that, you would need to find a very skilled and experienced surgeon, regardless of what type of surgery you chose. There will, however, be possible life-style changing side effects with surgery including short or long term incontinence, short or long term or possibly possible perm ED.

At your age and current health, that is something to think about and factor into your decision process.

Please keep us posted, and ask a million questions if needed. We have men experienced with all the treatment choices you have before you.

You definitely don't want to rush or feel rushed mentally or by a doctor into making this critical decision in your life.

David in SC
Posted 12/18/2009 3:29 PM (GMT 0)
Rick, Slow down and spend a lot of time reading on this forum and talking to other PC patients. You have already heard some of the reasons why from the very experienced and knowledgeabe guys above, so I won't elaborate more on that. I will only report that taking my time and considering what I learned over a 2 month period made me change my mind from open surgery to another option which I came to believe was right for me. Surgery has worked well for many men on this forum and may well be the way to go for you. Just take your time to be sure.....as Purgatory has pointed out on many occasions, there are long term lifestyle issues to weigh (with any options)....and there are no "do-overs" after the chosen proceedure is done. Don't hesitate to keep asking questions. Best wishes on your journey. Joe ______________________ Age -67 PSA - 4.5 Biopsy   (9/4/09) - Positive in 5 of 8 cores. In those 5 cores, 5 of 11 samples were positive. Gleason 3+3=6. Stage – T1C   Ct and Bone scans negative   BT performed on 12/11/09. 84 seeds of Palladium 103. Surgery at 7:30 - Home at 12:30 same day with no catheter. Side effects as expected -  some burning, frequency, urgency, blood in urine which has subsided.   Resumed daily   1 ½ mile walk after 3 days.   BT will be followed in 2 months with 25 IGRT treatments.   
Posted 12/18/2009 3:31 PM (GMT 0)
A few odd things about this thread. I'm surprised that Ricky states that a radiology oncologist would say that surgery was the better option based on one core of 5% and gleason 6.

Another post which I'm sure was a misunderstanding was the one who said he had heard of guys golfing just days after surgery. I believe that doesn't happen after what is major surgery be it robotic or open. I assume those were from brachytherapy or biopsy posts.

Ricky with your numbers you have plenty of time to decide on a treatment or active surveillance. You must weigh quality of life issue against possible longevity along with more and more recent reports of this disease currently being over treated. I admit to that bias myself. Do take your time and when it gets overwhelming, I recommend you take a week off and as best as you can try not to think about cancer at all. For myself I returned to a more calm rational perspective afterward. When you do decide hold off a few days before committing to whatever you choose then go ahead if it's a treatment without looking back. good luck Ricky .. from a Rick
Posted 12/18/2009 3:48 PM (GMT 0)

Hi

I just wanted to add a comment about surgeries. I would agree that everyone is different and as an example, I had by-pass surgery back in 2005 with 5 by-pass grafts. Normally that would put most men on recovery for a long time, but I was discharged 2 1/2 days after the surgery and walked a mile that afternoon. Within a week, I was walking 2 miles a day.  I went back to work at 4 weeks and shocked the hell out of all my co-workers.

My healing after the open PCA surgery was very quick also. I am in very very good health, never smoked, not over-weight, etc. I think all those factors make a big difference.

Posted 12/18/2009 5:36 PM (GMT 0)
Ricky,
Delayed treatment of low risk PC has exactly the same results as immediate treatment. Your stats indicate a very low risk PC and may even indicate an indolant PC, that is a cancer that will never grow and willl never hurt you. Half the men your age have this type of PC most don't know it and all die of other causes without knowing they have it, and unfortunately sometimes it is found on a biopsy.
Unfortunately, "it's cancer and I have to get it out" has been drilled into doctors and patients for years. Prostate Cancer are malformed cells that may or may not grow, just like a freckle is a malformed cell.
There is now a groundswell of doctors that are coming to the conclusion that in low risk cases the cure may be worse than the disease. Many organizations like the PCRI and most prostate oncologists recommend it you meet the criteria of AS, that can be found on the John Hopkins site, or on the PCRI site the best course of action is to wait, take quarterly psa tests and another biopsy in a year to see if the PC is progressing or not. 70% show no progression in 5 years and if it does progress treatment is just as effective as immediate treatment. Learn the facts before you make a decision that will affect the rest of your life.
JohnT
Posted 12/19/2009 6:03 AM (GMT 0)
Just to clarify, the radiology oncologist felt he could "solve" my PC with RT. He stated that the success statistics are similar to surgery and side effects should be better than surgery. He stated that the RT statistics are limited to a 20 year time horizon. There is no data beyond 20 years for the modern RT. He suspects with my health and age that I would live beyond that and may have to face this problem again. Thus he stated surgery would be "his choice" although he would gladly treat me if that is what I decided.
There is so much information it is like drinking from a fire hose. But I am going to take my time. Think it through. I have an appt with my primary care physician first week of Jan. I want to get his input.
Thanks for the kind words..and I will "slow down"
RickyD
Posted 12/19/2009 11:51 AM (GMT 0)
The guy whom claimed golfing a few days ago after DaVinci surgery is the very young 1st robotic patient in the USA, done by doctor Menon. I not only heard about his surgery story, met the guy at Henry Ford Hosp. as he had a follow up visit with Dr. Menon that day...claims he was golfing in just a couple days, of course he was only like 43 yrs. old (some age around that, super young patient in this disease). But, surely as one of our brothers herein says it is more common or usual that you have some major healthing that needs to happen, which only makes sense.

Did you know if you are too much overweight you might be refused for DaVinci...well Dr. Menon had one of his patients there that lost like 50-70 lbs., so as to facilitate fitting up with the machinery or something, doc said no surgery till you drop some significant weight. He did just that and hoping for setting the date up with DaVinci.
Posted 12/19/2009 2:09 PM (GMT 0)
The value of this group . . . cases remarkably similar. I am 55 yrs. old: had an even lower "low grade""low level" 1% of 1/12 samples, gleason 6 diagnosed on Nov. 23. All the options were layed out, the most likey being AS, BT and Robotic. The Uro basically said I was a good candidate for AS, if it were not for the head game. The impulse is to act now - don't blow an early diagnosis - with surgery "just get it out".

After re-reading the Uro report where he repeats "low grade, low volume" 3X I've slowed down trying to not rush to judgement -
Two factors I have to put into it:
1) Family history. I have PCa ALL over the place father, uncles on both sides. For me AS really does feel like waiting for the other shoe to drop.
2) I have been on hormone replacement for over 8 yrs and almost useless without it. T-levels crash to <100-150. Literally can't make it thru the day. Uro said surgery (once they know its out) is most likely case to return to treatment.

The BT sounds really good. I have an appt with a radiologist next week. Except . . . The only hope I have of continuing HRT is probably surgery. Also the overwhelming family history makes me more afraid of recurrence with BT and more limited back-up options.

Finally, I have sought the opinions of a former - long trusted PCP and a Uro who does not do robotic. There advise: robotic based on my age (ease of recovery and "its out"). So, no final decision yet. I keep looking for a convincing argument for AS and BT - but don't want to live with a shadow over me.
Posted 12/19/2009 3:08 PM (GMT 0)
Hey Ricky,
You are in a great position right now. While you are drinking from the fire hose, I'll spritz a little something else in your direction: Start getting in shape. Now! Any treatment you choose, whenever you choose it, will go better if you are in shape. Get rid of the belly fat. Exercise and Kegel a lot. Get a set of 500 gram wrist weights and wear them under your shirt. Try to build up so you can wear them all day.
And empty that prostate as often as you can. It will never be easier than right this second.
If you decide on treatment you can wait 6 months-(statistically it makes no difference if indolent)- and use the time to eat right, jog, get your house, job, insurance and most important: love life, in order.
You've been given a gift many of us were not offered: a "heads-up". Don't let panic force you to cut this time short. Grab it and use it fully.
Good luck. (I wish someone had told me these things.)
Jeff
Posted 12/23/2009 12:32 AM (GMT 0)
Today I had a seperate consultations with two surgeons.  Dr. Sharpe (referred to as S below) who performs RALP and Dr. Flatt (referred to as F below) who performs RRP.  Here are their numbers as reported to me in the conversations:

Number of  operations  performed:                                  S: 200     F:1400

% of patients "dry" within 12 months:                             S: 95%    F: 99%

% of patients "no ED and no drugs" within 12 months:   S: 60%    F: 75%

Certainly the 1400 surgeries gives me more confidence than 200.  The incontinence numbers are not quite apples to apples comparison.

S stated it this way: In 12 months 94-96% of his patients are at 0 to 1 pad. He stated this is the definition of continent.  Many with 1 pad could go without but have a mental block.

F stated it this way: In 6 months 99% of his patients are DRY.

F went on to state: He has done a "sling" in only 1 of his patients but has performed 5 more sling surgeries on RALP patients from the area.

He also stated that the company that makes the sling device has told him their business is "way up" since RALP became fashionable... hmmmm

Both gave me confidence in their capabilities.  S was very young and little RRP background.  F was middle aged (like me) and stated he had done a few RALP but preferred RRP and has left RALP to others. 

I am definitely leaning toward the RRP for the better numbers above.

I have one more surgeon to consult with in early January, another RALP surgeon.  I will decide how to proceed in mid January. 

I am also working on improving my physical conditioning.  I am 6 foot 215 and would like to lose 20 pounds although not mentioned by either surgeon.


Thanks for this sounding board.

RickyD

Posted 12/23/2009 12:45 AM (GMT 0)
Ricky, sounds like you are taking your time and doing your own due diligence. That is great. With your stats, wouldn't let anyone or anything rush me.

Between the 2 doctors you mentioned, I would go with the experienced open surgeon. I am the product of open surgery and would do it again.

Keep checking, and please keep us posted. You are doing great so far.

David in SC
Posted 12/23/2009 10:35 AM (GMT 0)
Ricky,
Watch out for those numbers. Those sound like an exaggeration to me - or they have modified the definition of "dry".
Let me tell you, 150 ml per day - 1 pad - is not continent. You will drip once every 5 seconds. You will manage to hold it if you sit quietly, but sneeze or cough and you wet your pants. Lift up your computer, or reach for the milk in the fridge you will have to change your underwear. That is "one pad per day".
I just did an experiment to see how much liquid makes a 3" diameter spot. It took 10 ml. about 1/3 oz. Is that continent?
How much did you leak before the surgery? Most likely Zero.

We have referred several times to a study of about 8000 men. The open surgery rates were better than the robotic rates but nowhere near 99%. Search for "Leak free pad free" That is my definition of dry- and should be your definition too. Would you call one drop every 5 seconds "dry" when you are standing in front of a crowd doing a presentation - or standing in an operating room performing surgery. I didn't think so.

(By the way, I leak about 400-450ml per day. I weigh my pads so I can see if I am making progress.)

Also watch out for the definition of "No ED". Do they consider needing a Vacuum device "No ED"?
Your numbers are pretty good so you have time and by the time you are ready for surgery you will be in tip top shape. Right?
Now get out there and empty that prostate!
Jeff
Posted 12/23/2009 8:27 PM (GMT 0)
Worried guy makes some very good points. A recent study indicated that only 28% were leak free, pad free in 2 years and that progress after 2 years was minimal.
Also was the radiation oncologist you saw referred to you by your urologist?
This is how the game is played. A urologist will often refer his older patients to the radiologist which provides him a lot of business. The urologist is his real customer, not you. In marginal cases like yours the radiologist will always agree with the urologist if he feels it won't make a huge difference; if he disagrees a lot he won't get future referrals. (would you keep sending patients to a doctor that always contridicted you)?
It is always much better to find a radiologist on your own who has no connection to the referring doctor; then you will get a straight answer devoid of any conflict of interest.
The same goes for large institutions who provide doctors from all different fields to talk to you. It is rare that they will every disagree about your treatment because they have to live and work with one another daily. They also fall into "group think" which is not what you are looking for in 2nd opinions. It is much better to get 2nd opinions from doctors that have no relation to each other.
JT
Posted 12/23/2009 10:14 PM (GMT 0)
My urologist did not make any referrals. He wanted me to reach a decision that I was happy with. He stated I had many options and his preference was surgery. I found the radiation oncologist and surgeons on my own. The urology practice that my urlogist is in does include Dr Flatt (mentioned above). There was no lobbying by my urologist for anyone specifically.
Posted 1/2/2010 2:49 PM (GMT 0)
What's the latest Ricky? As a "low volume, low grade" patient myself, I am curious how you're doing, and which course you're on.

I've about talked myself out. 2nd urologist opinion, my primary, back to a former primary, a radiologist, an alternative "integrative" med guy from Nova Scotia, a college friend (and his brother!) both with cases on both sides of the spectrum (mild to serious), and all the message boards I can find.

The best advice (from both my uro and the radiologist "this won't kill you, but the stress could" . . . relax take some time to decide then don't look back. I think I'm close to making the call for robotic. From what I can tell, our age makes the difference in the ability to bounce back (in the ways that count). My Uro has done hundreds and has a great reputation. I can't see the benefits of open in the numbers (again relative to age and recovery ability). It will be enough of an ordeal without the protracted recovery required by open. (I think!).

Age 55, PSA 3 (up from 1 in six months), 1% of one sample, gleason 3+3 (6). Could do AS - or, as the common opinion seems to be "get rid of it"! AS just seems like waiting for the other shoe to drop.
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