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

randy_in_indy said:

This is frustrating typing a novel only for it to dissapear and
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.

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

Ira

hopeful and optimistic said:

A different viewpoint
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

Well Ira...now it is....
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

randy_in_indy said:

Well Ira...now it is....
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

Randy,
Best wishes to you.
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

rebelyeller said:

neighbor
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

No Problem
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

lewvino said:

Randy,
Best wishes to you.
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

Thanks Larry
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

WHW said:

Thought I Might Weigh in on The Discussion
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

Hi Sonny
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

http://www.prostate-cancer.com/brachytherapy/side-effects/brachytherapy-side-effects.html

Check out this website Gadan1. Don't be in too big of a hurry to make a decision. Read, study and ask questions. My doctor said that in the 15 years that he has been doing this procedure that he has had no patients to experience a reoccurance of cancer. My first urologist want to cut on me and I didn't want that. I then went Vanderbilt Medical Center in Nashville for a second opinion. After that I settled in on the Brachytherapy option. Every thing that i heard and read about this procedure just reinforced my decision to go for it. I hope this helps you my friend and I truly wish you will. Oh, if it is any concern to you......Within one week postop I experience my first erection. I have masturbated several time and I am able to prodcuce ejaculate, although it's not like it once was, but at least it's still there. It could deminish with upcoming months but it could stay where it is. At least I am have erections and orgasams. The possibility of not is so much greater with the other surgical options. Again, best wishes!

****

hopeful and optimistic said:

Randy, Dec 9th is pretty quick
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

Thanks Ira
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 optimistic said:

Hi Randy,
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

Well I pulled an end-a-round and saw yet another expert
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.