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66 yr old just found out and trying to make the best choice of treatments

gadan1
Posts: 19
Joined: Oct 2009

Tried to do this Saturday, but did not post. I'm 66, found out Wed I have Prostate Cancer. Early detection i guess, I"m 66 minor stroke 4 yrs ago, type 2 diabetes, and all that goes with it. Actually feel pretty good and in decent health. My PSA was 5.2 , Gleason 3+4, and Stge T1C. I understand there was 1 of 12 positive in the biopsy. My Urologist told me the 3 choices, and kind of suggested the seed option. While there he gave me a name and number to set up a consult. I went through with it, but now i'm having second thoughts. My wife and I after reading so much stuff over the weekend, now are leaning toward removal, but I just don't want to make the wrong choice. I would greatly appreciate any thoughts on what little information i have provided, but any help is better than none. Thanks

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Sorry to hear about your diagnosis. I'm 55 and had my Davinci surgery on Aug. 12. Doing really great post op. I had PSA similiar to yours and my Gleason after pathology report was 3+4. Also type 2 diabetic. I had my first post surgery PSA Drawn today and am anxiously awaiting the result since I did have a positive margin post surgery.

It's a tough decision to make so do your homework and read, read, read.
If you go with surgery (Robotic) Make sure you get a suregeon with tons of experience. I'm not talking a couple hundred...Look for someone in the 1000's. It has a steep learning curve and big impact on urine control and sexual functioning. If you want to shoot me an email off line I'll be glad to talk to you more 'frank' about what to expect or at least what I encountered. I can be reached at lewvino@yahoo.com

Oh yes, My dad was treated for prostate cancer back in 1997 and is doing great so the cancer is treatable!

Larry

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lewvino
Posts: 1006
Joined: May 2009

Sorry to hear about your diagnosis. I'm 55 and had my Davinci surgery on Aug. 12. Doing really great post op. I had PSA similiar to yours and my Gleason after pathology report was 3+4. Also type 2 diabetic. I had my first post surgery PSA Drawn today and am anxiously awaiting the result since I did have a positive margin post surgery.

It's a tough decision to make so do your homework and read, read, read.
If you go with surgery (Robotic) Make sure you get a suregeon with tons of experience. I'm not talking a couple hundred...Look for someone in the 1000's. It has a steep learning curve and big impact on urine control and sexual functioning. If you want to shoot me an email off line I'll be glad to talk to you more 'frank' about what to expect or at least what I encountered. I can be reached at lewvino@yahoo.com

Oh yes, My dad was treated for prostate cancer back in 1997 and is doing great so the cancer is treatable!

Larry

hopeful and opt...
Posts: 1317
Joined: Apr 2009

Well remember this is a very slow growing disease, so you do not have to rush to treat........take you time and make the right decision, read, support groups, etc,

Have the parrafin blocks from your biopsy sent to an EXPERT for a second opinion..so that you are not under or over treated..........figuring out the gleason score is very complicated...a good choice is Dr. Epstein, Johns Hopkins Medical Center.

good luck
Ira
active surveillence
2 of 12 cores, less than 5 percent involvement
gleason 3+3=6
psa 2.2 in Jan 2.5 in july
diagnosed march 2009, age 66

muttsrule
Posts: 52
Joined: Sep 2009

Hi, and welcome to the club. I'm just recuperating from cryoablation (ice). A very helpful book to get is 100 Questions and Answers about Prostate Cancer, 2nd ed, which my urologist gave me. Another key to lots of info is www.johnshopkinshealthalerts. My best wishes. John in Seattle

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shipjim
Posts: 130
Joined: Apr 2006

Those are your choices. If you do and its as you describe odds are its gone forever, there could be a couple of side effects like impotecy and incontinance which may or may not last, after over 3 yrs I have minor incontinence and am impotent. There are radiation and hormone treatments but if they don't work I believe surgery is out.
Iused DaVinci and had no pain and little slow down of live.
Don't let them cut you open, there's no need, if your Doc won't use the robot find one who will it's your body and your choice. If he doesn't like it find a new doc cause after the surgery, you won't really need him anyway. Your GP can do the PSA test.

Read this site and research on your own. For me cut was the only option.

good luck, jj

P.s There's no spell check on this so if I missed something sorry.

gadan1
Posts: 19
Joined: Oct 2009

Thanks guys. It means a lot to hear first hand accounts. I know each case is unique but some knowledge and experience is much better than none. I'm really OK with it for now, but I am so torn about my choices. I want it over with quickly, but then again, my Urologist kind of suggested the seeds. But the implants would be where he works so I am not totally sure he is not somewhat biased. Then again, he is the one that suggested I give it much thought before deciding. What i have learned is what was said about experience. That appears to be a constant theme. I guess my biggest fear is the in continence. I just wish there was a consensus about what procedure is most reliable. I find it hard to believe that there is not "preferred" procedure widely held by all. I'm not expecting unanimous agreement, but the idea that each specialist thinks his choice is superior is problematic to say the least. I live near a supposed highly respected seed implant center. Most people i understand must spend 6 weeks here in Atlanta living in a hotel/motel. It is only a 25 min drive for me each day if i go that route. Please feel free to offer any other thoughts. I truly am undecided and apprehensive.
Thanks again for any advice.

hopeful and opt...
Posts: 1317
Joined: Apr 2009

sit back in your chair, and take a deep breath.....feel a little better......basically we all go thru shock during the first month or so........

YOu do not have to stay local for any treatment that you decide....you simple want the best with whatever treatment you decide on. YOu only get one chance.

Yes your doc is probably biased.......money talks

From what I read, robotic surgery is the gold standard.......as one of the above posters mentions..........after radiation........it is very very hard to cut because the tissue is radiated, however after surgery you can have radiation if it is not successful.

once again get a second opinion on the results of your biopsy.......it can affect your treatment choice.
Ira

Kentr
Posts: 111
Joined: May 2009

"I'm not expecting unanimous agreement, but the idea that each specialist thinks his choice is superior is problematic to say the least. I live near a supposed highly respected seed implant center. Most people i understand must spend 6 weeks here in Atlanta living in a hotel/motel"

First off, absent some really off the wall surgical situation, you will NOT need to spend 6 weeks in Atlanta post surgery. I had brachytherapy in January of 2008. Surgery took place around 2:00 pm and I was on the way home around 6:30 pm (I don't remember much of the trip because I was dopey from anesthesia - lol).

As far as the "best" procedure goes, they all seem to have similar results which only adds to the confusion. My doctor discussed all options with me. I did a lot of reading and eventually decided on brachytherapy. When I told the doctor my decision he said that's what he would do. He had no stake in the process because it would be done elsewhere.

Do I have any regrets? No. Have I had second thoughts? Yes. Why? I haven't got a clue other than reading what some others have posted and wondering if things might have turned out even better had I had a different procedure.

Another thing to consider (as noted by my doctor) is that probably 95% of the guys that had successful surgery (of ANY type) don't post to message boards - they move on with their lives.

So, take your time, check out info at reputable websites (Mayo Clinic, Kaiser, etc.), read what the guys are posting here, etc.

Best of luck as you struggle with your decision.

Kent

Edited to add: I was 66 at the time of surgery.

gadan1
Posts: 19
Joined: Oct 2009

Thaks Kent. What you said about posts on here. I do want to say that the first few minutes after finding this board and reading all of the recent comments, I felt ORDINARY. It really is sad that more guys do not share their experiences, but i guess it's natural.
My wife is so supportive and I love her more now than ever before, and i did not know that was possible. But, she cannot understand the many emotions I am experiencing. Who do I tell, who don't i tell. When do I tell our grown children. Do i share details and emotions, or just give them the basics. How do I keep from wondering if i will be dead in a few months or years. All of these thoughts seem to consume my thought processes this past week. It's not fear. It is not knowing what procedure to choose that drives me to wonder so much.
I haved rambled on and I am sorry. What I need now is to decide what type of treatment to have. Until that decision is made, I can't move ahead. Most people and sites say it is up to me. That I knew the minute my Urologist told me I have cancer.
I"m looking for individual opinions from guys that have been through this. You will not decide for me, but who better to ask than those who have gone down this path ahead of me.

Kentr
Posts: 111
Joined: May 2009

You have every right in the world to be on an emotional roller coaster. For me, it was best to tell everyone (kids and friends) what was going on - the hardest one to tell was my 20 year old granddaughter - we are thicker than thieves and she was extremely upset until I "talked her down."

I think there's a great deal to be accomplished by getting it all out in the open. You will be surprised at the support you will receive - it's a whole lot better than going it alone! You aren't Superman my friend!

We all wonder how long we're going to be around so your thoughts are fully in concert with all of us. Just remember, every time you get in a car could be your last so it's really not that much different, is it?

Although my brachytherapy actually went well, I sometimes wonder about the same thing. Is the cancer really gone? Did the seeds miss some of the cancer? Had it already spread but they didn't catch it? Will it come back with a vengance and take me out? All tough issues to deal with I know.

I cannot, nor will I, tell you brachytherapy is the "best" way to go. I can, however, say that after a few months my system calmed down. The urgency related to urinating and bowel movements essentially passed (full disclosure - every now and then I do have an "urgency" issue related to my bowels but it's no worse than eating hot chile peppers and ice cream along with a Big Mac if you know what I mean - lol)

No incontinence issues at all. However, my libido has tanked and I do have issues related to ED which I have not pursued with my doctor.

Like you, I have a lady I love very much and that makes you and I quite lucky. If she's having difficulty understanding your emotions it's normal - she's probably scared so talk about all the positive things - we caught it early, it's treatable, I'm going to whip this thing, etc.

Hang in there Gadan!

gadan1
Posts: 19
Joined: Oct 2009

Your last reply about did it. I had tears in my eyes while reading it, this coming from a retired policeman. You sound so much like me and what I am feeling. As for the ED, the days of putting jellybeans in a jar each time are long past. Lately, it is more an event than a routine, but we are both OK with that since parts of performance have been negatively affected by the diabetes, high blood pressure meds and menopause.
If there are others out there that have made the choice, gone through treatment, and have an opinion, please share them with me. I am going to give myself at least two weeks to research and decide. Your input would be invaluable to me.
Again, Thanks

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Gadan1,
When I was diagnosed with the prostate cancer (Spring 2009) my doctor told me he was more worried about the effects of my diabeties! Pre surgery I went on a weight loss plan and lost 35 pounds before surgery! As a result my Diabetic meds were cut in 1/2 doze and my blood pressure dropped also from the weight loss. I had my surgery on Aug. 12.

I chose the Davinci for my option and am glad I did. Especially after getting the Pathology report and speaking with the Dr I knew exactly how severe the cancer at a Gleason 7. Still a Gleason 7 but was down graded from 4+3 to 3+4. The doctor told me just yesterday they actually found some of the type 5 cells in the pathology and he was glad we did the surgery when I did. If needed I can have radiation as a second line of defense.

I know of another man age 71 that just had his Davinci about 3 months ago.

Get the book by Patrick Walsh on Prostate cancer. It is an excellent read and might help you make up your mind. You can order it online from any of the booksellers for around $10.00.

Dr. Walsh is a surgeon from John Hopkins and is an EXPERT. Of course he talks more surgery but you will learn lots from reading his book about this cancer.
Its called Dr. Walsh's guide to surviving prostate cancer.

It looks like you might live around Atlanta area. I live in Chattanooga and if you want to meet and talk in person just let me know.

Larry

Kentr
Posts: 111
Joined: May 2009

....There's nothing wrong with getting tears in your eyes! Maybe this will be a shock to you and maybe it won't but....police officers are people with feelings just like everyone else. I spent some time in military police and worked closely with law enforcement for several years in the past so I know what I'm talking about.

LBlanks's picture
LBlanks
Posts: 44
Joined: Oct 2009

I am also 66, recently diagnoised with prostate cancer, PSA 4.01, Gleason of 3+3, TC1 and 6 of 12 samples positive.
Also live in the Atlanta area (Fayetteville)
I've been going through the same process of trying to decide between ProstRcision treatment at Radiotherapy Clinics of Georgia or robotic surgery.
I've talked with Dr. Critz twice and have gotten his analysis from their database on my prospects as a candidate for prostRcision of being a 98% cure rate.
However,I think I've decided to have the prostate removed (recent decision). Now I'm trying to determine who, where and when to have it done.
I decided that it's best to have a back-up plan and if the radiation doesn't work, then other than hormone therapy, there's not much else to do.
With removal (surgery), if the PSA indicates additional treatment is required, you have the radiation as a back-up.
At least this was my though process but we all have to search our souls and consult with our family to see what's best for each of us as individuals.

Good luck on your research and whichever direction you decide, stay positive and don't look back.

Larry B

rebelyeller
Posts: 2
Joined: Nov 2009

Larry, I do not not know what the rules are for this forum, but I just joined and yes have recently had a positive biopsy(gleason 4+4 for an 8,with 11 of 12 cores positive) and am going through all of the same trauma. I have a bone and cat scan scheduled for this Friday. Anyway, about the rules, I also live in Fayetteville and I would like to talk to you and perhaps meet if it would be appropriate. If this interests you then I will provide my phone number to call. In any event, I wish you the best of skill in making your choice.

My apologies to the rest of the world if this is not the place to do this and my comment, intended for Larry only because of our proximity, appears for everyone.

Don

LBlanks's picture
LBlanks
Posts: 44
Joined: Oct 2009

Don

Send me an email at larryblanks@hotmail.com or look me up in the directory and give me a call.
I'll gladly share my particular situation and decision process with you.

Larry

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Gadan,

I have been out of town for a couple of weeks and there was no net connection up in the TN hills that I could rely on.

I have just finished reading through the threads to your post and thought I would weigh in.

Some of the folks here have seen my posts in the past and know my story, but maybe you haven't.

I was 60 in June when I was diagnosed with PCa. My dr called me about 2 minutes after I had hung up from talking with my wife, who was in the hospital. She was running a 105 temperature and I was on my way to see her.

My wife was diagnosed with Multiple Myeloma Cancer in November 2005. Her cancer is not curable. You do the things that are available and have success and you beat it down til it rears it's head and you start again. She has been through induction chemo-therapy (which led to a stroke after 7 days on the meds), an operation to clear the 90% blockage of her carotid artery caused by the blood clot from the drug. She has been through additional chemo, stem cell transplant (which weakened her immune system) and four hospitalizations with pneumonia in the last 4 years. The last bout put her into ARDS (respiratory distress) and a trip to the ICU on the ventilator which lasted 4 weeks with a stay in the hospital of 7 weeks.

It was at the beginning of this last hospitalization that my doc called to tell me I had PCa. I could not help but chuckle and laugh when he told me. It took him by surprise. I told him that he might as well be telling me he x-rayed my foot because I bumped it in the night and he was calling to tell me the bone was broke. I did not have time for cancer. I am my wife's caregiver and she needs my energy.

So while I was staying with her by day, I was doing my research by night. I've become quite adept at medical research because of my wife. That is when I came to find this site and one other that I frequented daily. I posed my questions, read the experiences, did further research and traveled my path.

Unlike my wife's cancer, mine had a fairly good chance of being cured. There are no guarantees with PCa and everyone reacts differently to the cancer and the treatments, including the side effects.

My goal was to get the cancer out. To minimize my down time and return to my wife.

I chose da Vinci surgery. It was the least downtime. It offered the immediacy of feedback on the cancer via the post surgery pathology. I would know to what degree the side effects would hit me and could have hope that they would improve over time.

I felt that getting the cancer out was the goal. My biggest concern was the incontinence side effect. I am a college baseball/softball sports official. And peeing my pants or changing my pads every 2 innings was not an option. Kinda would have put an end to my activity there.

Ed was another issue. Maybe in a way my wife's cancer was a blessing. It prepared me and us for that. The damage to her bones from the cancer and the effects from the drugs and transplant make it uncomfortable for her most of the time. So we have spent the last couple of years being more intimate than we had ever been in our 27 years of marriage. We learned new and exciting ways to please each other that did not involve intercourse. So when the topic of ED was talked about between us, it was almost a moot point. And by the way, just 4 weeks out from treatment and no erections yet, I can tell you that the "DRY" orgasms, without erection, following surgery are some of the most intense that I have ever experienced in my life. And since they are dry, multiple orgasm is now a part of my vocabulary as well.

For the incontinence, I have been dry since the day they took the catheter out.

I am blessed with really good health insurance so once I made the decision to have the surgery, I wanted the best I could find. I wanted the guy who cared as much about the side effects as he did about getting the cancer out.

Once I found the guy that was right for me, a serene sense of peace and calm came over me. I spent the next 4 weeks bringing my wife home from the hospital and seeing that she was improving to the point that I could leave to go have the surgery. I went alone and was gone 8 days from beginning to end.

I had no problem telling my kids and my family about the cancer. I just told them "it is what it is". There are no guarantees in life and "Every Day is A Bonus".

So take your time. Think about your family and your wife. Talk to your wife and include her in all of your thoughts and discussions about the journey you are on. There is not one of us that can make this trip alone. PCa not only effects us but our wives and loved ones almost to a greater extent. They can not make the trip for us as they might want. They can only offer support, love and comfort. They have to know that we are not fragile and they can talk to us about it and everything that comes along. We must be cognizant of the fact that they are with us and we can't shut them out.

In the long run the decision we make on the course of treatment is almost secondary. How we chose to live our lives is far more important. PCa is not an automatic death sentence. Yours has been detected early, you have time to wade through this decision jungle and prepare for the future.

None of us walk alone. Our loved ones, our fellow PCa brothers and God walk with us. While many may not have said it, they have all been saying prayers of blessing for you and your family from the day you first posted. Be at peace, slow down and it will become clear what is right for you.

The prayers of myself and my wife are with you and your family,

Sonny

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

Here are my stats pre and post surgery for comparison.

Sonny

61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative

da Vinci 9/17/09 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Sonny,

I wrote below to Ira and in my book of a note I mentioned and wondered several things from reading all your posts....

I would be interested in know how you recovered and when you started doing things after surgery...like driving, golfing if you golf...and your officiating...if that was even in season at the time of your surgery. I would also like to know if you were a competitive athlete growing up and if you felt that had anything to do with your recovery good or bad.

thanks

Randy

saoco
Posts: 43
Joined: Aug 2009

Hi gadan it is my style no to welcome any one to this club,but to try to help them when they come.if you notice most of the fellows are kind of new to pc.it seen that when people get better they forget how hard it was to know that they had pc.I ha pc five years ago,thank GOD I
had Laproscopy surgery and thank God my psa has been 0.04.I went trough my cancer by mylself
but I had God by myside and that was more than enough.so,you do not has to go through this by yourself you have many people here that will help you.I just want to ask every one in here,no to forget that there were people helping them when they need a shoulder to cry.
you will be ok.keep posting,asking God for help and you will find the answer you need.

gadan1
Posts: 19
Joined: Oct 2009

Why do I keep tearing up when i read these messages? It is so not me. Please accept my most heartfelt appreciation for your words and guidance. I know now the power of the internet and words of others. I am amazed that total strangers are caring about other total strangers. I realize we all share(d) the same issue, but I am just not accustomed to this degree of openness about myself.
Every word I have read means something to me. I am truly undecided as to treatment.
If I may ask and if anyone knows. What are my odds of being cured. I believe I read it was about 87-90%, but I may have read what I wanted to into the stats, not the facts.
I check and read this board several times a day. It is invaluable as a resource because it is advice offered from men who forged the path I am following.

saoco
Posts: 43
Joined: Aug 2009

God is the only one who knows when is the time.
I will give you some statidtics that I know.
when I have my surgery my psa=4.5,gleason=3=3,age=46.
after surgery,gleason=3=3,that is true gleason.
margin all clear,semical,clear,bladder neck,clear.
my doctor told me recurance chances very small.
statics for any person with my numbers.
cancer free after 5=99%,10=92%,12=89%
with the help of GOD,CURE=100%.
I know what you are going thru,I promise you,it will be fine.
I know what I am talking about.my father had pc,my brother had pc.
just remember any choise you take has it own risk.
my father took radiation because he was 75years when it hit him,but after a couple of years after radiation,every time he uses the bathroom,he use to bleed at lot and I needed to take him to the hospital.He died at 89 but no from pc.

WHW's picture
WHW
Posts: 189
Joined: Jul 2009

This is a link to the Sloan Kettering Nomogram calculator. It is a predictor of the outcome of various treatments on the individual statistics of you cancer. It is pretty simple and straight forward. Nomograms are used widely in the PCa field.

I ran you numbers and they looked good. Don't want to spoil it for you. Give it a try and let us know what you think.

Be sure to use the Pre-Treatment Calculator, it is the first one listed.

http://www.mskcc.org/applications/nomograms/Prostate/index.aspx

Sonny

gadan1
Posts: 19
Joined: Oct 2009

I had my biopsy September 30th I am somewhat concerned about bleeding from the biopsy. The Dr told me before the biopsy i would bleed for a few days and not to worry about it. I bled for 3 weeks gradually improving each day. I had a burning sensation when urinating and it too has gotten better, but it's still there. I have had 3 kidney stones, and it is a milder but similar feeling. I bled like a pig from my penis when i woke up from the biopsy but neither the nurse nor the Dr mentioned it. I am curious if anyone else experienced the same things.

I have not forgotten all the advice and places to visit for more information,I am still searching for the best option for me, but I find the advice of those who have gone through it the most legitimate. Again Thanks

Kentr
Posts: 111
Joined: May 2009

Gadan,

I did not experience bleeding after my biopsy but my doctor did tell me in advance it could happen and not to be overly concerned. If you are still experiencing some bleeding after three weeks, I would at least give him a call just to be on the safe side (it's probably nothing but it doesn;t hurt to check).

Ah, kidney stones - now there's a fun little medical situation. I've had them three times as well and while I was going through the attack I was praying for the Angel of Death to show up so I could grab her by the throat and ask, "Where in the heck have you been?" :)

gadan1
Posts: 19
Joined: Oct 2009

Man do I know about wanting to die and just end the pain. My mother had 5 children and on kidney stone. She said if she had to choose between the two, she would go through 5 births instead of 1 stone.
I"m no longer bleeding, but i have some remaining pain when i urinate. That is what i'm concerned about with that issue.

Kentr
Posts: 111
Joined: May 2009

Gadan,

I doubt that's a major issue but call your doctor anyway - it's probably a very minor infection. I'm sure you had to take an antibiotic like Cipro prior to, and after, the biopsy but maybe you needed to take it a little longer? Look at it this way. A bipopsy of your prostate is anything but a "normal" experience for your body so it has every right to protest a little. Ask the doctor.

gadan1
Posts: 19
Joined: Oct 2009

Today, i purchased the book by Dr. Walsh from Amazon and took the Sloan-Kettering PC Nomogr test.
I was encouraged by the Current Model results, and less so bye the Historical Model. Bottom line is, I caught it early, and my odds are petty good of beating this. Another program says I can expect to live an additional 15 yrs on average. I plan on beating that score.

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Dr. Walsh is surgeon and talks from traditional surgery perspective but is an excellent book and would apply for Davinci if you go with that method.

Remember on the historical models that treatments have changed greatly in the last 10 years!

Larry

hopeful and opt...
Posts: 1317
Joined: Apr 2009

a while

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

gadan1, I guess I was lucky and did not bleed but was warned about it. If you are bleeding that long you definitely need to get that checked...that's just not right. I just had my biopsy yesterday my prostate was only 17 grams so they only took 8 samples 2 from a nodgle they found in a DRE exam. I have a PSA of 6.125 and am expecting to have cancer as my father did in his autopsey report at age 71. He had a gleason of 3+3=6 and a psa level reported of 31. He did not die from it though his death was a result of advanced alzhiemers most likely caused by a head injury in the Korean War.

I took the antibiotics like clockwork because I did not want any complications... took my last pill of Ciprofloxacin Hcl tonight. I am already doing research on this so when I get my stats I will know or hope to know what I want to do. I like the Divinci robot method if it's an option for me for the many reasons it's touted however I do believe the most important factor wether you choose that method or any other surgery is the surgeon himself.

I think I am going to try and take my biopsey results and go several places with it Mayo Clinic, perhaps John Hopkins and maybe one other place. I am only 52 and am in pretty good health from being a competitive distance runner most of my young life. I have put on some weight and become sedentary over the last 5 years due to arthritis in my hip joints...something I probably inherited from my mother. If I do have cancer it will probably provoke me into getting physical again despite the arthritis because it makes me mad I have it after being so healthy all my life. There are many things they can do for incontinence now ...after the fact with surgery etc...ED is not really and issue for me because I figure if it comes to that I will just channel my energies elsewhere....I'd rather have control over peeing than sexual function if I could choose. I like Sonny's approach in finding a surgeon that would be just as concerned about the incontinence and ed functions as erradicating the cancer. I may look into contacting his doctor at Henery Ford Medical Institute. I wish the best for you choosing your path....and I'm now preparing for that call from the uroligist to tell me my stats....no matter what it is, just got to deal with it...analyze it....determine the best path for my situation....and move on down the road making more of everyday I am alive with no regrets. One thing I know...I am in control of what I do with this choice and I am not going to let money determine that...I will go into debt if I have to in order to find the very best doctor and method for what I am handed in the biopsy results. I have done some reading on the Mayo Clinic....here is what I know...first hand from experience...my daughter had both her uereters surgically re-implanted because of reflux that was causing her many reocurring infections from an early age of 1 to 5 when she had it done at Mayo in Rochester. That hospital is simply amazing. Another thing I have learned - read on their site - they have 20,000 PROSTATE surgery patients with detailed pre and post records in their data base that allows them to build a treatment profile for best success based on that data. Mayo Clinic uses their own data from their own research and patients to guide and prognosticate current cases rather than relying on others research and cases to establish best practices - its a different approach that has been very successful for them. For this reason I want and value their oppinion and will seek it. Again the best for your search and decision process. I will post back here again once I get my results from the biopsey.

GOD BLESS YOU ALL

randy

hopeful and opt...
Posts: 1317
Joined: Apr 2009

Good luck for the biopsy results.............my good thoughts and prayers are with you.......Ira

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randy_in_indy
Posts: 493
Joined: Oct 2009

I just want a low Gleason Score and stage 2 at worse for containment. I have resolved that I have it.

Randy

hopeful and opt...
Posts: 1317
Joined: Apr 2009

I tend to cross the bridge when I come to it, that is why you are being tested....Now depending on your results there are different options that you have.......for example if you do not have the disease, which I hope for, there are various options available.......there is a new drug out called avodart which is a preventive.....for those who have not been diagnosed, and are at a high risk........there are side effect for this drug...

Now if you test positive , and your numbers are low, you can do active surveillance as I am doing.............it can be indefinate.........anyway, Randy please, please cross the bridge when you come to it....then make the best decision based on the information that you have.

It ain't...till it is.

Ira

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randy_in_indy
Posts: 493
Joined: Oct 2009

never post! Oh now it works because I am only writing a meanial amount...Sheesh..hit the preview comment and it goes away never to return even after hitting back button...I poured my entire plan out...discussed dr's stats...asked questions..this sucks...it's too late now and I have to go to bed.

tpelle
Posts: 150
Joined: Aug 2003

Randy, I lost two posts a couple days ago trying to "preview." Finally realized, like you, that "preview means delete". Then I tried to use "contact us." Everytime I tried to answer their security question like what is 4 + 2, when I entered 6 and then tried to send, I'd get another message that my "6" was incorrect. Then I'd get another math question. This went on and on and I was never able to get a complaint message off. They certainly don't make it easy. tpelle

hopeful and opt...
Posts: 1317
Joined: Apr 2009

About a week or two ago, I read on a different forum from this site, that 3 lines or less work.

Ira

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randy_in_indy
Posts: 493
Joined: Oct 2009

I was successful at getting a complaint off and they answered here is what they said:

"Thank you for writing Randy.

The technical folks will be scheduling an outage to run some programs to clean up the database, etc. in the wee hours sometime this week. In the interim, some folks are copying and saving their post before hitting submit so if it doesn't publish, they still have it and can submit it later.

In the interim, I know it's inadequate, but I do apologize for all the trouble.

Greta

Your CSN Staff
American Cancer Society Cancer Survivors Network®"

So there is hope yet!

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randy_in_indy
Posts: 493
Joined: Oct 2009

I am now officially a bonifide memeber of this PCa club. As I suspected and expected the nodgle they felt was cancer I had a real strong feeling...and it proved to be correct- biopsy results came back on 10-27-09.

Stats:

52 years old
8-15-09 PSA 7.25 - got as a lark while at the Indiana State Fair
10-2-09 PSA 6.125 - from Family Dr. vist also had DRE he didn't feel anything unusal
10-14-09 DRE - Urologist felt Nodgle
10-20-09 Biopsy
10-27-09 Biopsy report
17 gram prostate
3 of 8 samples cancerous 50%, 20%, 20% all on right side where nodgle was none on left
Gleason 3+3=6 T2a
10-29-09 Consultation with Dr.
Thinking best treatment is removal of what he believes is organ contained cancer
Following discussion is more than happy to refer and get me in for second opinions
from anyone I want. We spoke of Mani Mennon in MI - Sonny's Surgeon - he thought
you had to make a donation to his insitute in order to get on his schedule - any
any truth to that Sonny? Also talked of JA Smith at Vanderbilt considered one
of the top ten in US. - still holding on to that option Have an Appt set 11/17 with
Michael Koch - Indiana University Dept of Medicine - probably done more than 3,000
Robotic Ops. Also seeing radiation Oncologist Dr. Dugan - Carmel, IN tomorrow.

Some thoughts and questions for some of you having already gone through with your research. A comment my Urologist made was want to know what questions you have not asked yet and should? Dr. Greg Wahle teamed with Jeff Vaught for all robotic procedures said ask me how many times I had to dish out of a robotic and finish in open? ZERO How many blood transfusions have I had to give? Zero He's done over 300 and says his incontinence is at 2-5% as long as you don't consider incontinence when you leak with snezzing and coughing. My mother at 78 already has that. Says a young healthy guy like myself with only one side nerve sparred should be 70% but said he would only quote 50% for ED. He would take the right side nerve and swing wide with cut because thats the side of nodgle and suspects or wants to limit chances of nueroinvasion causing a reoccurance - makes sense to me - Anyone know something I should know about that? I too believe that I should have no issues with incontence because of my strength in legs from being a distance runner most of my life running over 100,000 miles in my lifetime. Also the ED part does not scare me too much as I have never ever had one issue with that except once when the one dating years back was a downer - partner I have been with the last 9 years has always spurred on exceptional outcomes. Also, I feel being the highly trained athlete in younger years should help in this area for recovery. Sonny looks to me like a person that was athletic all his life...probably at a very competitive level and he had a very quick recovery from the OP overall getting back to help his wife in 8 days...and no incontinence. Sonny if you read this can you comment. Hope all is well with all plans and recoveries and for the first time in my life in anything I want to shoot for a ZERO score once I have the mutated cells extracted from my body. OH, through some of my research I have found that men in the Rocky Mountains and Northeast are much more prevalent to contract prostate cancer...I grew up in Colo and lived in CT, and MN much of my life until settling here in Indiana for the past 12 years. Please everyone feel free to comment share with anything for about anything I've posted. I currently have surgery set for 12-9-9 with Dr. Wahle but may change based on my appointments with Dr's above or more. He said I do not have to rush but wouldn't want me to wait 6 months....Hey that reminds me ...does anyone have any information regarding the following:

If you have a biopsy - punch 8 holes in prostate of which three went through the cancer...why would that not make an exit for cancer cells to move outside the prostate and or grow at a higher rate..that has been nagging at my mostly over analytical brain but makes complete sense to me from a logic perspective. Also, when ejaculation after the biopsy contains blood could not that semen contain cancer cells? I have not asked the dr these questions yet.

Well God Bless all and thanks so much to all who write on these and other boards because its certainly a very positive force for and among all of us!!!

Randy

hopeful and opt...
Posts: 1317
Joined: Apr 2009

First, you do not have to be in any rush to make a fast decision. Gleason 3+3= 6 is not real aggressive. Also not more than three cores. I would get a second opinion of the biopsy
by an expert in the field so that you are not under or over treated.(YOur only 52, but active surveillance might be discussed---not saying that this is for you, but you really are not in a rush).

By the way, I wonder why there was only 8 cores? (Oh, just relooked-I think that an 8 gram prostate is small?)

There is a test. It's an endorectal MRI with a spectroscopy that is at major hospitals that will show if there is any nodule involement outside the prostate, and the extent of the cancer within the prostate. The spectroscopy that makes the MRI more accurate is investigational so it is not medically covered, but the mri is. You will really know where you stand.

Look into all treatments. There's one, where there's a guy in FL who I think freezes one lope only to avoid negative.....there are differences of opinion on this. PLease forgive me, but I forget what this procedure is.

My doctor, a world class surgeon at ucla does NOT believe that biopsies spread cancer.

Go to support groups in your area.

Take a deep breathe, be focused but go on with your life.

Ira

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randy_in_indy
Posts: 493
Joined: Oct 2009

I questioned both the oncologist and my urologist about the Endorectoal MRI with a coil and one thought it was a possible way to see if the cancer had breeched the capsule(Onocologist)...the other said that is totally speculative and indicated that even if it had it would not change the procedure the way he see's it should be carried out and that is...not sparing the right nerve due to the positioning of the papable nodgle most certainly with cancer. Urologist indicated that they are finding that most often the nerves with have some exchange with the cancer because of the tight grip they have on the prostate capsle. I am having faith in believing he knows what he's talking about and trust him to do the right thing...if there is any chance of cancer being in the nerve on that side I definitely do not have a problem with them taking it....I should still have 100% of the other side and will have to rely on that to get me through the potential ED problem. Again, Thanks for all your words of wisdom...and help.

Randy

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lewvino
Posts: 1006
Joined: May 2009

Randy,
Best wishes to you. I'm 55 and just had my Davinci in August this year. I had Gleason 7.
I'm originially from Northern Indiana but now live in Tn. Near Cleveland.

My surgeon was Dr. Smith at Vanderbilt whom you mention and I was very pleased with him and his staff.

I have used 1 pad only since surgery! That was the day the cath came out. I get a few little drips now and then but nothing that would really need a pad. Mostly happens when I get up or down from the floor!

On the sexual side Dr. spared 100% nerves on the one side and in his estimate 50-70% on the other side. I've ben able with Levitra to get useable erections with effort. I visited the Adult store last week and bought a penis ring which did the trick to keep the blood that was making it to the penis in the penis! Was very happy with it. At almost 3 months post surgery I've been very happy with overall recovery. If you want to speak about anything shoot me an email at lewvino@yahoo.com in regards to my experience with Dr. Smith, etc.

I had asked about transfer of cancer cells during sex and the Doctors all seem to thing it won't happen.

I did have a small positive margin post surgery but my first PSA came back as 0. I get checked again in Late Feb to keep an eye on it and if needed will do follow up radiation to knock it out.

Again best wishes to you on your journey.

Larry

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randy_in_indy
Posts: 493
Joined: Oct 2009

I saw the oncologist last wed and he agreed for a guy my age "take it out" and leave radiation as a back pocket insurance policy or secondary approach. I just need to decide if I'm using the uroligist I signed up with and who did my biopsey. He is fairly proficient on the divinci with over 300 performed...actually spent time with both J. Smith and M Koch. I am interviewing M. Koch Next Tues. I actually already have a surgery date set up on Dec 9th with my original dr and may just leave it and get it over with. Two other Dr.s locally that come very highly rated are Scott and Hollingsbe both with over 1,500 performed and many Open's also. I do want to get it done prior to Christmas as my out of state son is visiting for his school break. I have some questions about how easy it is to get around once you have the cath out...as I will be getting that out just two days before my son arrives. How soon was it before you were driving again?

thanks for all your thoughts and help

Randy

hopeful and opt...
Posts: 1317
Joined: Apr 2009

You do not have to be in a rush....you get only one chance at whatever you do.......I think that it would be a good idea for you to take a little more time for research (my opinion).

If you get a endorectol MRI with a spectroscopy you will be able to more correctly stage your cancer.........you will see if it is in one lope or two, if one, you might want to consider freezing the affected tumor.........or you might want to consider active surveillance...now, I not a medical person, but some thoughts.

Ira

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randy_in_indy
Posts: 493
Joined: Oct 2009

I'm seeing another Dr. 11/17 and will grill him on that possibility....I assume it's in as many as three lope's because got back three positive core's and I know the Dr was moving the positions in the biopsy...My prostate is only 17 grams which is on the low side as far as size for my age of 52 - most this age have one 20-30 grams. Since there is a papable nodgle with a DRE it's more concerning to me that it needs to come out...especially when the core sample he specifically tried to hit the nodgle with came back with 50% cancer. Again...my Urologist said the stagging of that MRI is controversial as to the value...again stating that he would not change the procedure one iota based on findings from the MRI...I am young...its a papable nodgle and best long term option is to take it out. The Oncologist trained at General Mass also agreed if it was him he'd remove it. I feel pretty confident thats what's needed in this case....yet like you I'm not a doctor. Common sense tells me get it out now...rather than later...use radiation as a back up if there are positive margins. The pathology post op should tell me everything I need to know about next steps. Again I thank you for your comments and suggestions...I will continue to educate myself and ask for more oppinions.

God Bless

Randy

hopeful and opt...
Posts: 1317
Joined: Apr 2009

It sounds like you have a good plan.

As I understand there are only two lobes in the prostate. It may show that the three postive cores of your biopsy may be in only one lobe, some believe in freezing the one lobe to avoid impotence--freezing two lopes definitely will cause impotance. (The one lobe freezing is controversal).

I would make a list of questions for the new doc.....ask him about the various treatment methods....remember no rush.

Ira

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randy_in_indy
Posts: 493
Joined: Oct 2009

I was able to sneak in another appt with the touted experts in the group of Uroligists that my scheduled procedure on 12/9 is in....I am glad I did. Like this team much better for several reasons:

1. first thing out of his mouth...need to do an endorectol with coil to help determine if some or all of the right nerve bundle can be saved. My current surgeon was playing it safe and swinging wide and taking the nerve no matter what. So as Sonny says I'll be strapping in for another ride with a proctoscope! This guy has done over 1,800 divinci's and is the guy I want to do mine. He also disagrees with my pre-op staging being a T2b instead of a T2a. Because 3 of the 4 cores had cancer on that side. ...He also indicated he would have done 12 samples no matter the size of my prostate (17 grams)

2. They have not been burned yet by saving some of the nerve after the results of endorectol has indicated they could on sides of nodgles or cancer.

3. They automatically put in a sling while doing the surgery and found that it has improved the incont. incidence by 15%.

I like my options with this team better..but still seeing a teaching surgeon Mike Koch on 11/17...but will probably not use him for fear of someone other than him performing the surgery that no one would be wise of except the team in the op room.

So my journey continues and now I will probably have it out on Dec 28th or 29th.

Later.

gadan1
Posts: 19
Joined: Oct 2009

Thanks everyone for the continued input. I know there have been many replies to my original post and I am very very appreciative. I may sound indecisive and may be, but I just don't want to have the surgery and regret my choice if there are problems. I also see in the many responses the thought processes used to decide on treatment. I hope that tomorrow, next week, next month, or next year, someone like us sees them and realizes there is no single reaction or deliberative process.
In watching the news yesterday, hearing the American Medical Association issued a new position on cancer testing. If I understood it correctly, their research shows that after years of educating men and woman about early screening for cancers, specifically breast and prostate cancers, they have seen very minor drops in the success rates after treatments. They are asking if surgeries are being used way too often. It makes me rethink the Active Surveillance option. It is not my nature to rely on luck or chance, but I dread the possibility of living with incontinence.

PCaT
Posts: 3
Joined: Dec 2009

The recently released research certainly doesn't make the treatment decisions any easier. In a nationwide study of over 50,000 men, 3,331 were diagnosed with PCa from 1986-2007. About 10% of these men deferred any treatment and half of those remained untreated throughout their follow-up (mean 7.7 years). The results of the study showed that the rates of developing metastases or of dying from PCa were the same whether treated or following "watchful waiting".

Prospective Study of Determinants and Outcomes of Deferred Treatment or Watchful Waiting Among Men eith Prostate Cancer in a Nationwide Cohort. William V. Shappley, III, et al. Journal of Clinical Oncology, Vol. 27, No. 30 (Oct 20), 2009.

I'm still in the decision-making stage myself and personally given my age (53) I'm more inclined to do something although I haven't decided just yet what that something might be. Also given my age, I'm not too keen on living with incontinence or impotence for the rest of my life either. I'm actually interested in and am investigating the proton beam therapy offered at Loma Linda and other places now. This sounds very positive to me but there doesn't seem to be many if any of the longer-term studies on effectiveness and side effects.

Wishing you the best and hoping that you find the correct decision for you.

Tom

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2ndBase
Posts: 220
Joined: Mar 2004

Radiation and hormone treatment would be a good choice for your case. there is less problems going this way. It is what I did and I had a Gleason of 9 and psa of 24. Mine had already spread and though this did not cure it ( nothing does if it spreads) I have no cancer in the prostate today. My dad took just radiation years ago and lived to be 90. He was about your age when dx. All the best.

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