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My Robotic Prostatectomy Experience

whubbs
Posts: 77
Joined: Sep 2008

I was diagnosed back in Aug with PCa, I'm 41, healthy, Gleason score of 3+3 and 3 of 12 biopsy cores positive.
I made the decision to go with the robotic prostatectomy, mainly due to the positive outcomes of rapid return erectile function and incontinence improvements being touted by most robotic surgeons, as well as the positive Oncological results mainly being expected in cases of early detection and organ confined.
The surgeon I selected was Dr. Ash Tewari at NY Presbyterian Hospital.
His specialty is in robotic prostatectomies, and he practices his own pioneered methods of nerve sparing techniques.
It is now 2 weeks after my surgery, I have lingering continence issues, which are easily and discreetly dealt with.
Erectile function has returned in part with the help of Levitra after only a week and a half, which is a remarkable outcome if you ask me!
Each day I see improvement in each aspect.
I am back to work (desk job), however on limited time as I do remain a bit tired and incision areas are right on the belt line, which doesnt bode well with some pants.
I have to say, the worst part of the entire experience was the 3T transrectal MRI, the biopsy and the catheter.
Finding the energy to get up out of the bed in the hospital and walk, with the annoying catheter in was horrible. Otherwise, pain was not too bad once it was controlled.
One thing I would suggest to anyone going for the robotic method, is to WALK as soon as you can. In Dr. Tewari's case, he wanted me up within hrs of the surgery.
At the time I had thought it crazy, but the longer I laid there, the worse the gas pains got. It got to a point where I wasn't getting up because I was weak from not eating and the gas pains were so bad. Walking is absolutely needed to relieve this pain.
I regret that I didn't get up and fight through the gas pain. It lingered for days and set me back.
One thing to keep in mind regarding prostatectomy, is that it can not be performed if you do radiation first. Once you do radiation (seeds for example), I was told you can not do any surgical method. It was always suggested to me that seeding be a secondary method unless you are older.
I welcome any questions from anyone who is considering a robotic prostatectomy, you can email me at cobrabite427@yahoo.com (please make subject 'prostatectomy')
I certainly recommend Dr. Tewari, he is an outstanding surgeon, whose priorities are in Oncology, Erectile function and continency return in the method of his own pioneered nerve sparing techniques.
I will continue to post to this thread on my outcome, but I am very pleased so far.
Good luck to everyone with the method you chose. Be sure to educate yourself as much as you can, and make the decision with all the questions answered.
-Wayne

johndeer
Posts: 17
Joined: Oct 2008

Wayne,
I am very interested to read your experience with the robot. I have a date at City of Hope in Cal. of Feb 5 for the same procedure. I am happy for you in your outcome and proud of you for being so forthcoming in your experience. I'm sure my wife will kick me out of the hospital bed if I'm not willing. I am 54, with a gleason score of 3+3 and a PSA of 2.0. I too, think I am too young for the radiation ( I am considering proton beam). Dr Kawachi at City of Hope has done 325 + procedures since '03 and will do 377 this year. He is very concerned for my quality of life issues, so he will do his best ,I believe, to ensure the best result.
God speed your recovery!
Rick

JLM
Posts: 15
Joined: Dec 2009

I have had my da Vince robotic surgery and I'm doing Great! I never had to take any Pain meds when I was in the hospital, I went home that Friday morning, the only reason I stayed till Friday was because my surgery was late in the evening. The only thing I took was a prescription Tylenol for a little pain. But I had NO TROUBLE. I having a fast recovery and The surgeon was able to save my nerves. Its been 4 weeks now and I'm doing great! I got full control over my urination, with no leaking!
This Video is of me:
http://www.vcstar.com/videos/detail/robotic-medicine/

whubbs
Posts: 77
Joined: Sep 2008

3 week update:
I am down to 1/3 of the 800mg of Ibuprofin I was taking twice a day, and continue the stool softener and Pepcid (needed to keep Ibuprofin from eating a hole in my stomach).
If I stop Ibuprofin cold turkey I get some sharp pain so Doc recommended staying on for some
more time and lower dosage.
Incisions are healing pretty well, most of the steri-strips have fallen off, with the exeption of the larger incision below my navel, that continues to feel sensitive. There may be a hernia under there from the surgery, but can't tell yet.
Incontinence is still a pretty mild issue, improving each day slowly.
I've been able to sleep over 6 hrs without getting up, and today for the first time I was able to sleep from 10 to 5 and could have pushed it to 6 when I usually get up, with no leaks.
For the most part, daily activity on my feet promotes leaks, but I do change the pad often and may go through 3 or 4 per day, just to insure dryness. Could probably go with one all day.

gcapaz
Posts: 4
Joined: Oct 2008

Good to hear you are doing so well.
I'm 5 days into recovery from my RPE (12-05-08).
My first office visit is this friday and can't
wait to get the cather removed.
The only problem I seem to have is not moving
my bowls as often as I use too, but then it's
only been 5 days. I sit there and just pass gas
and don't dare to push..lol

whubbs
Posts: 77
Joined: Sep 2008

Same with me that first, most difficult week.
Your not eating as much, so BM's will be less.
It all gets SO much better once the catheter is out.
Just be ready for some leakage, I was surprised by the lack of continence I had at first, but it comes back quick. Don't do any kegel exercises for 48 hours after catheter removal.
Then do them as much as you can, they do help.
Good luck on Friday!

whubbs
Posts: 77
Joined: Sep 2008

These 5 weeks have felt like 5 months.
I've stopped taking Ibuprofen and most all of the other Meds.
Still experiencing a little pain, but manageable.

I'm growing frustrated with my doctors office, as I've left some messages regarding my continued prescription of Levitra use daily, as it causes my face to flush, pronounced heartbeat and panic attacks in my sleep. So, I've stopped taking that as well until they call. Anxiously awaiting their reply to decide what to do with that.
That function is slow to return, but luckily not like playing billiards with rope.

Incisions are healing well, though I rested a piece of wood against my stomach in Lowes the other night and opened one up, embarrassing situation, however I did have a trail of blood to help me find my abandoned cart after sealing up the leak.

Speaking of leaks, return of continency is slow. Granted I have been remiss in doing Kegel exercises,(it is hard to remember to do these things), it is slowly getting better.

Feeling great, and ready for the New Year!
Feel free to email me if you'd like more info to ease some anxieties.
Everyone have a Happy and Healthy Holiday and New Year!

acslife
Posts: 12
Joined: Dec 2008

I had the same surgery performed in July 2007 by Dr. Scott Miller at North Side Hospital in Atlanta, GA. He's a genius. I was ready to return to work after six weeks, but did so after eight. I am an Accountant, so sitting was not a problem. No beltline incision. Mine was left side above the naval. Only lingering side effect was incontinence. I came off the pads after 13 months, so expect a slow recovery there. Get the pads that fit like a brief. Walgreens has them. They were the most comfortable.
Erections are 70 to 80 percent of presurgery, but I am 57 and Okay with the slight loss.
I am very thankful and feel like a new kid from the womb.

Best of luck

larry59
Posts: 41
Joined: Oct 2008

Wayne congrats and I hope you got the cure. I've heard nothing but positive about the robotic surgery and about the aftereffects being pretty minor. Hope that's your case. Let me know how you are doing! And best of luck to you.

sonomablue
Posts: 2
Joined: Dec 2008

Congrats to all of you. I just found this site tonight. I was diagnosed in October. After consulting with my local Urologist, and after reading the book "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, 2nd Ed, I received a referral to UCSF. I am scheduled to have the Da Vinci surgery in Feb. I will continue to read these threads. Nice to hear from people who have been, or are currently going through it. thanks for your information, suggestions, thoughts, etc.

socky
Posts: 4
Joined: Sep 2008

I had the most amazing surgeon do my Robotic Da Vinci, his name is Dr. Premal Desai here in Los Angeles at Cedars Sinai. I had the surgery on December 1st and went back to work last week. The worst part was the gas and the catheter. Once the catheter was taken out I have had no problem with incontinence. I also have had normal erections and orgasams. Strange when nothing comes out!!. I try and do the kegel exercises everyday. The past four weeks seem to be a haze. I can't beleive I had cancer and now it is gone. I am so thankful to have a wonderful partner to help me thru this and incredible friends.

larry59
Posts: 41
Joined: Oct 2008

The recent postings give me great hope that you guys are in good shape prostate-wise. Keep up with the program and follow the docs' instructions. And don't let the docs boss you around too much about pain meds, if you need em, take em.
Best of luck to all of you!!!!!!!!

spinner
Posts: 1
Joined: Aug 2009

Hi - we are all new to this so bear with me..... my husband (age 59) was diagnozed with PC and has been treated by Dr Kia Michel - who is BTW - a most wonderful - compassionate - and thorough -and experienced doctor who spent much time with both of us and gave is the low-down.....My husband opted for the DaVinci surgery with him in the next couple of weeks. Yesterday we learnt that Dr Michel will not be performing surgeries for a while due to some personal medical issues of his. He referred us to Dr Desai who is his partner in the practice. I was happy to read of one's good impression of Dr Desai and wanted to know more about anyone's experience with him - pre and post surgery. Also if anybody knows more of Dr Desai's track record in robotic surgery. Any feedbacks would be greatly appreciated.

Roni123
Posts: 1
Joined: Mar 2009

Hi ,

I wanna ask about Dr.Patrick Walsh , is he a doctor at John's Hopkins ? Does he do the Robotic Da Vinci surgery ? Can you please tell me more about the outcome of such a surgery?
Where is UCSF at ?

Thanks ,

whubbs
Posts: 77
Joined: Sep 2008

Yes, Dr. Walsh is a world leader in robotic prostatectomies at Johns Hopkins.
He is published on the subject and has helped pioneer the nerve sparing procedure.
I sought the help of Dr. Ash Tewari in NYC. Easily on par with Dr. Walsh in terms of nerve sparing abilities. He performs 3 per day year round.
Regarding the outcome of the surgery, the best I can tell you is my own story, which I've tried to document the best I could here.
Feel free to email me at cobrabite427@yahoo.com and I'd be happy to share my experiences and issues more in depth.
Good luck and stay positive!

Charles_S
Posts: 2
Joined: Oct 2009

What's your health plan - how did you get the UCSF referral? I have Kaiser and would like to have the surgery at UCSF

bdhilton
Posts: 759
Joined: Jan 2010

What is your stage e.g. T2C, PSA, did your DRE have a lump? etc... I am thinking of Da Vinci and my status are TB2, GG 4+3 PSA 2.8/4.1 and my doctor did fell a lump that started all of this process...many thanks

g8rb8's picture
g8rb8
Posts: 18
Joined: Dec 2008

I'm sitting here doing all kinds of reading and research online after getting my diagnosis on 12/23. I just came across this board and am really encouraged by all the frank discussion goign on. I'm 45 with a 3+3 Gleason, T2a (who knew all these terms before?)

Thank you for sharing your experiences with the robotic procedure. I'm working with a surgeon at a university who sounds like he's doing some of the same nerve-sparing techniques you describe.

Just seeing words from someone who's been through this and is working through it so quickly helps ease some of my fears. I guess that won't completely go awawy, but information, education and prayer are critically important. We're meeting on Jan 6 to start talking through the treatment options and the robotic procedure sounds like the best option so far....

I'm looking forward to reading and posting more on here as things progress.

whubbs
Posts: 77
Joined: Sep 2008

g8rb8- Your gleason and stage are the same as mine were. Glad to hear that the biopsy suggests organ confined, these are good indicators.

I didn't expect so many similar stories as mine, especially the age group of men in my situation, guys in their youthful forties, completely blind-sided by this.
I'm particularly thankful for a doctor I had a few years ago, Dr. Arnold Winokur, he was my GP at the time, he was a great doctor and very pleasant and nice man. We've since lost him to his own cancer battle, however thanks to his recommendation to set my baseline PSA at the age of 38-39, I wouldn't have caught the prostate cancer when I did, at a stage when it is most treatable. He's just as responsible for saving my life as the surgeon who removed it.

As far as recovery, after 6 weeks I'm feeling mostly back to myself again.
I've been back to work, desk job designing aircraft, not strenuous at all, for a few weeks. Incisions are healed and no longer are irritated by the belt line.
Though I do have a remaining hernia situation caused by the surgery that needs attention as well as a couple sutures that are actually sticking out that need to be trimmed off.

The continency and erectile issues are tough, and if you approach it with a sense of humor, it helps ease the anxiety of such dignity-striping issues. My wife is very understanding and supportive, this alone is one of the most important aspects of recovery- a loving, supportive partner/family to get you through the tough times.

This board is so important too. I learned a lot from it before seeing the doctors, I had the right questions to ask BEFORE I went, you're just a number to them unfortunately.
Feel free to email me at the email address I posted earlier, I've heard from some men who have been very anxious about the surgery and I feel obligated to help by discussing it openly and honestly. Not something appropriate for the board, but I'll let you know what I experienced right down to the catheter/drain issues - continency/erectile issues.
I know I would have felt so much better, if not so much more PREPARED, had I heard the candid experiences that someone else had.

Good luck everyone and Happy New Year!
May 2009 bring us all health and happiness!

whubbs
Posts: 77
Joined: Sep 2008

Well, I've had my PSA checked..... NON DETECTABLE... exactly what I wanted to hear!!
Things are going pretty well, Dr. Tewari is happy with my outcome so far.
I'll need a little fix on a herniated muscle in a couple months time, but otherwise he says I'm right on track.
I was given a bladder control medication to help with the stress incontinence.
We'll see how that works.
Otherwise, I'm now off of any ED medications, mostly due to the fact that I had reactions to both. So far, so good with that. Not perfect, but working at it ;)

A resounding PHEW! is what I experienced standing outside the hospital last night after my appointment in Manhattan. I wish that feeling to everyone here!!
I only hope that number remains at nil.

Bushmills
Posts: 6
Joined: Jul 2009

Whubbs, thank you so much for your detailed and direct stories of how your surgery and the aftermath went. It helps me during this period when I have to decide what treatment to try. I'm 70 years old, with the stats being 7.8 PSA, 3+4=7 Gleason, T2a, with perineural invasion. Looks like I'm heading toward some sort of radiation, tho prostatectomy may still be an option. But what I need is just what you're telling: what's the catheter like? importance of walking after surgery. Problems of gas. The reality of dealing with prostate cancer.

But one thing you said stopped me: you asked people to email you, so you could tell about "catheter/drain issues -- continency/erectile issues" -- "not something appropriate for the board." My god, if this isn't absolutely 100% "appropriate for the board," I don't know what is. Please tell all, in all the gory -- and helpful and illuminating -- detail. We NEED it.

Again, thank you so much.

Don

rocky24
Posts: 1
Joined: Jan 2009

Hi Whubbs ,Hope you are well..Did Dr.Tewari offer catheterless recovery option that he has tested?

whubbs
Posts: 77
Joined: Sep 2008

Yes, Dr. Tewari suggested that if it were possible he would.
This was something he would determine once the surgery was underway.
I understood it that the surgery would still involve the catheter, but may be removed after surgery if it were anatomically feasible. (meaning if the sphincter at the base of the bladder wasn't interrupted, that they could essentially remove the catheter)
In hindsight, with all of the immediate bladder spasms, pain, etc. it helped to not have to deal with the incontinency issues until a week later.
Week with the catheter was very uncomfortable though.
I'm not sure which way I'd go if I truly had the choice.

whubbs
Posts: 77
Joined: Sep 2008

Well, I've had my PSA checked..... NON DETECTABLE... exactly what I wanted to hear!!
Things are going pretty well, Dr. Tewari is happy with my outcome so far.
I'll need a little fix on a herniated muscle in a couple months time, but otherwise he says I'm right on track.
I was given a bladder control medication to help with the stress incontinence.
We'll see how that works.
Otherwise, I'm now off of any ED medications, mostly due to the fact that I had reactions to both. So far, so good with that. Not perfect, but working at it ;)

A resounding PHEW! is what I experienced standing outside the hospital last night after my appointment in Manhattan. I wish that feeling to everyone here!!
I only hope that number remains at nil.

whubbs
Posts: 77
Joined: Sep 2008

If you had asked me a month ago how I'd be feeling at 2 months, I wouldn't have expected to be reporting such improvements by now.
Incisions feel fine now.
I'm back to running around, wrestling with the kids and not limited in any way.
Urinary control is inching in improvements. Now just deal with stress incontinence (when I cough, sneeze, get angry, etc. there is a small amount of leakage), without the help of the med's the doc suggested. I just couldn't bring myself to take any more pills.
ED is a limited problem, close enough to normal and improving every day, without pills.
Quality of life has returned to what I consider 100%.
Occasionally a little pain from the area where the prostate was located, doc says due to nerves 'waking up', I love when they try to dumb it down for us.

I'd be happy to share any further details if you email me @ cobrabite427@yahoo.com
All the best to everyone, I hope your outcomes are picture perfect!

g8rb8's picture
g8rb8
Posts: 18
Joined: Dec 2008

That's great news. Hearing stories like yours and others on here has helped settle my nerves and prepare questions and get my head ready for the procedure in a couple of weeks. Hope the recovery continues as it has for you.

shane59's picture
shane59
Posts: 86
Joined: Jan 2010

yes it took a bit of getting used to my exsperiance was mild discomfort I had a radical prostectomy no robot some initial pain peeing somtimes leakage and blader stinging felt like peeing razor blades just got used to the plumbing then after 3 weeks had staples removed and then the catheter oh boy staples hurt comming out but barely felt catheter being removed .as soon as catheter out just wanted to pee and pee so be ready for some pads or be close to the toilet first day couldnt stop peeing was ok when lying on my back. 2 weeks later 1 to 2 pads a day with slight leakage getting better each day. and as for walking after surgery start as soon as you can the wind pain hurts like hell each day you will get stronger and soon forget the pain . lifes good keep up the exersisers when you remember best of luck to everyone thanks for your honest comments Shane almost 5 weeks post op now

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

As I read some of these listings I am under the impression that too many men are in a hurry to get surgery. There is no good evidence that treating prostate cancer at psa readings this low and gleasons on 6 or so does anymore than inconvience the patient. I would never let someone cut on me unless there was good evidence of need.

lion1
Posts: 240
Joined: May 2007

Everyone is an individual, so each decision made has to be based on what the individual feels, hears from their doctor, and the mindset they possess to determine how they live with their situation.

There's no rolling the dice here, a person must make the best decision for themselves. Noone has a crystal ball. Some folks are bigger risk takers than others----bottom line individual's decision........ If your 49,like me, loving family, and the Doc said we got it all, did not go outside the prostate--you'll be around another 40 years------then I know I made the right decision---cancer-free.

Again, depends on the individual---when I get that nagging pain in my hip---I'm not thinking a cancer cell got away and the cancer is still in me---this is what works for me.

My perspective.

whubbs
Posts: 77
Joined: Sep 2008

I don't think anyone here is in any 'hurry' to have this kind of surgery. :)

2ndBase- If you've had different treatment, please share your results, both oncological and physical.

If people are posting up, they are doing their due diligence to educate themselves on treatment options and getting personal opinions and experiences.

There is plenty of good evidence that proves surgery is a valuable treatment for low PSA (which isn't a very good indicator of anything), Gleason scores of less than 7 and biopsies that show lower percentage core penetration.
Robotic is the gold standard for nerve sparing treatment, in the hands of a qualified surgeon.

In the end, it's up to the patient to decide whether to leave it in, watch and wait, run the risks and complications of a treatment if the cancer does make its way outside the prostate or is involved in the apex by the time treatment is decided or go ahead and pursue treatment when a biopsy shows a positive result of cancer inside the prostate.
Thing is, no one knows how fast the cancer will spread.
PSA isn't a good indication at all. It's an antigen that is excreted by prostate cells, and rises for many reasons (infections, ejaculation, cancer an sometimes- no reason at all). But it is proven to increase when prostate cells are cancerous.

I opted for the surgery because I understood the NEED. I needed to get it out, while it was still in an early state. Waiting for it to spread outside my prostate, potentially into my lymph nodes and into surrounding tissue or bone, wasn't something I wanted to gamble on. An inconvenience is certainly better than a pine box.

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

I can't say I didn't spend a month or two thinking the whole issue of surgery over before finally setting a date. Actually before I was diagnosed and questions arose concerning my PSA, I was determined to resort to "watchful waiting" as treatment. Once I got the news however the knowledge of what was inside my body and the possibilities of what could happen in the future brought me to the decision to have surgery. Sure I could have lived out my entire life and the cancer never progressed, but as a father and husband and an individual I didn't want to take the chance. It was a personal choice, one that each man has to make for himself. With all of the studies that have been released lately by the NEJOM concerning PSA testing, there has been alot of debate over these issues. As far as the doctors, it infuriates me when I hear them speak of PSA testing and it's overuse. It's easy for them to sit back in their lab coats and their 12:oo o'clock t-time and spout out this information. These are also the specialist who don't take into consideration that small group of men under age 50 that are diagnosed, or men with a family history, or African American men. It's easy to stand at a conferences and spout out the years of lab findings , it's another when you stand at a support group because you have it inside your body, then you're thankful for psa testing. As far as the surgery goes I progressively felt as though I really had no choice in the end. I came to the realization that I'm 40 years old and I have cancer in my body, do I really want to chance living with this for however long my body allows. I had someone point out to me that sometimes PC is slow growing and it may stay encapsulated. (I love that during this time people use words like "sometimes" and "may") So I gave them an analogy. I asked them, if someone found a bomb in your house and told you that "this" bomb sometimes doesn't explode necessarily, but it may one day. Now we can alter your house, and it may be that way the rest of the time you live there, but you won't have to worry about it blowing up. Or, you can just live with the bomb in your house and hope it doesn't explode, if it does, we can't guarantee if you'll make it out. Let's face it guys, we're not talking about anything minor, no matter how low on the scale of dangerous some people want to place prostate cancer you still spell it C-A-N-C-E-R. My wife even yells it now when she hears these debates on tv, "It's still cancer people!" I have no regrets about my surgery,I'm glad I was diagnosed in time that surgery was a hopeful option. It's every man's decision based on his heart and mind, and I support that wholeheartedly.

lion1
Posts: 240
Joined: May 2007

Well said Olee......well said.

Lion1

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

How well you describe what some of us feel Olee... this is not a rush to surgery. I for one have fought within myself for the answer. But you know what, lightening doesn't strike, the earth doesn't rumble , a voice from heaven doesn't shatter windows. We have to make the educated choice that is right for us and our families. I still wish that "wait and watch" was a viable choice. But I am only 54 and want to have another 30 years with my kids, grandkids, and my wife. I don't feel that the gamble is worth giving up precious time I have left with my family.

Paraplu
Posts: 37
Joined: Feb 2009

Wait and watch? Wait for what?

pchicks1
Posts: 1
Joined: Apr 2009

Certainly watch and wait might be the right option for some, and clearly I wouldn't let someone cut on me for no reason. PSA results, (5.0) may not definitively indicate cancer, but I'm thankful I had my biopsy. I had positive cells in 4 of the 12 core samples with a Gleason of 3+3 back in September. I reviewed my options and felt that at 51, I also wanted to be around for awhile. Although I have some faith, I wasn't going to wait for it to get any worse.
I chose to have the DaVinci method, performed by Dr Simon Chung in Northern VA, near DC. That was completed in the middle of February, and I'm even happier that I made the decision that I did. The pathology report indicated positive margins and a bit higher Gleason, 4+3. Had I waited a few years, who knows where I'd be? Plus, who in their proper mind set would want to undergo that biopsy again?! Let me tell anyone who has recently undergone that and found out that they have cancer, the worst may be behind you! The surgery was easier than I could have imagined, the catheter being the main obstacle for a week or so. Continence came back in a few days after catheter removal, and with the help of Cialis, I already have some return to function. I was playing golf by April 1, with no pain at all.
The issue with the positive margins may require some followup, but knowing that there was cancer on the outer extremities of my prostate tells me I needed to get it out of me!

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Has anyone who has been diagnosed with PC, stage 1, middle gleason scores, tried watchful waiting while changing their diet...for example taking Lycopin, seritonin, or you name it...exercise....and found their PSA lowering and/or biopsy turning to negative? I go in for the robotic surgery in May but feel great with no symtons. Its great to have a sharing website with guys in the same boat.
Cheers,
George

Paraplu
Posts: 37
Joined: Feb 2009

Hi, glad you're feeling good. Yeah, the hardest part is that you go into surgery and you have no pain, you won't come out feeling better, actually worse.
But waiting? Waiting for what? You want to wait until you feel bad? Until you feel like it might be too late? My advice, do it now.

hopeful and opt...
Posts: 1439
Joined: Apr 2009

Two week ago I saw a surgeon to discuss robotic surgery, who recommended Active Waiting as a treatment for me( instead of robotic surgery). Part of the monitoring is annual MRI/MRS and biopsy as well as quarterly psa's. Now I'm going for the MRI/MRS tomorrow which may change my treatment to surgery. I tend to think that surgery is the gold standard.

At a support group that I attended, I bumped into a man who when he was diagnosed decided to do hormone therapy only, I think that he's been doing this for 5-6 yars now. I don't know much about this, but he did mention that he has adverse physical situations, but overall he is happy with his decision. As I understand , people generally do hormone therapy in conjuction with , or treatment for more advanced cases, but it may be worth exploring, if you don't mind having hot flashes, and impotence. I guess you need to speak with a medical oncologist.

Ira

Go

whubbs
Posts: 77
Joined: Sep 2008

In response, from what I understand of hormone therapy, if caught early enough, can stop the tumor (not get rid of it) and will result in complete inpotence and physical changes like swollen breasts and other issues. If you decide to go that way, please understand the effects and be sure to be OK with it.

I just had a 6 month PSA check after my robotic. PSA is still Non-detectable!

Feeling good and doc had some suggestions for dealing with mild issues remaining.

Life is good.

whubbs
Posts: 77
Joined: Sep 2008

I heeded some advice from Dr. Tewari's assistant Carol recently that I want to share.

She had recommended weening myself of 'the pad'.
I thought it was silly, but it makes sense.

She recommended trying to lengthen the time between bathroom breaks during the day and to keep the pad for work.
When I get home, to loose the pad totally and sleep without.

It has really changed things. I remove it when I get home and don't replace it until the morning. Aside from a couple little leaks, things have improved tremendously from this.

I think what happens is that your body becomes complacent with the pad, and I have to admit, I find myself being more careful sneezing, coughing, picking things up, etc. without it, as opposed to the 'carefree' feeling you tend to get used to with it in.

Anyway, I recommend trying this if you are still having incontinence issues and are relying on a pad. Certainly worth a few wet undies to see if it works.

Good luck!

whubbs
Posts: 77
Joined: Sep 2008

I'm now 9 months outside of my robotic surgery.
PSA tests came back yesterday.. PSA remains still <.1 :)
100 % Continent (a little drip shutting off the valve, but is improving to 100% soon - Do your KEGELS!)
Other issue- Not a problem, maybe not 100% but by next appointment (1 year) I'm feeling that it will be.
Good luck to everyone dealing with this.
Feel free to email me @ cobrabite427@yahoo.com if you want to know any details on the robotic surgery, Ash Tewari (the best robotic surgeon in the Notheast!), side effects, pre and post surgery issues and suggestions/advice, etc.

brookjax's picture
brookjax
Posts: 18
Joined: Apr 2009

I have gone to a couple of Man to Man meetings and heard several cases where the actual Gleason scores after analysis after surgery were much higher than the pre-op biopsy indicated. In fact, mine were said to be Gleason 6 per the biopsy and it turned out to be what they call a '6/7,' indicating higher levels. One had a biopsy of a 7 and the post-op analysis was a 9, so I am glad I had the surgery. Even with a score of 6, the biopsy showed that there was cancer in several places over one side of the prostrate.

If you do the exercises daily, preferably 20 of them six times a day, the incontenance should go away in about three months.

I used Dr. Manaharran at the Univ. of Miami Medical Center on the recommendation of a co-worker, and I don't remember the operation at all. He is certified by the robotic surgery company Divinci, which is not true of all doctors who do the procedure. They have a list of certified doctors on the website of the company.

What I am wondering about is whether there are any other medications for ED other than cialis or viagra?

TucNav
Posts: 8
Joined: Aug 2009

Brookjax,

I have had ED for many years and have tried Cialis, Viagra and Levitra. The Levitra seems to work the best and the Cialis was the least effective. Have your Doc prescribe the largest tabs and then cut in half...more "bang" for the buck as your insurance will probably limit the number of tabs.

I am waiting on my treatmet options as I was just diagnosed but thinking DaVinci so I am hoping that my ED won't get worse...maybe better after surgery!

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

After getting a doubling psa of 3.9 last Nov., I tested stage 1 PC in mid march. Like many of us, I feel great BUT...had my psa done again this week and it now is 5.6. That convinces me surgery is necessary. I have scheduled the Da Vinci for May 21. I am 65 and feel blessed I have been healthly for so long.
Cheers,
George

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

You had the robotic surgery...did you get a crystogram? If so, what is it like? I am preparing myself for robotic surgery in 3 weeks.
Cheers,
George

whubbs
Posts: 77
Joined: Sep 2008

Did you mean a cystogram?
No, I did not get one.
In fact, I think they are more used afterwards in the cases of continued incontinence to determine where leaks are occuring.
Good luck on your surgery!

whubbs
Posts: 77
Joined: Sep 2008

Did you mean a cystogram?
No, I did not get one.
In fact, I think they are more used afterwards in the cases of continued incontinence to determine where leaks are occuring.
Good luck on your surgery!

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Talked to a friend who had da vinci 1.5 yrs ago. He had a cystogram to check for bladder leaks. If no leaks, cath is removed.
George

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Is there anyone with PC who had robotic in Ocala,Fl. area? I have surgery scheduled for later this month in Ocala.
Cheers,
George

whubbs
Posts: 77
Joined: Sep 2008

George,
Post this up as a new topic, and you'll get better results.

whubbs
Posts: 77
Joined: Sep 2008

Sorry- I'm apparently hitting the post button twice...

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