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Posted 1/25/2007 12:28 AM (GMT 0)
I am recently diagnosed and trying to decide whether to get nerve sparing surgery (probably with Dr. Patrick Walsh at Johns Hopkins) or some form of radiation (probably IMRT at UCSF or proton at Loma Linda). Can anyone give me their insights on this? What did each of you choose and why did you choose it?

I am 59, totally healthy (except for the minor detail of having prostate cancer), happily married for 38 years and have an active sex life. My last psa was 6.4. My Gleason is 3+3 or 3+4 depending on which pathologist you believe (I'm currently getting a third opinion from Dr. Jonathan Epstein at Johns Hopkins). I had 3 tumors out of 17 samples, the volume of which were 14%, 10% and <4%.

I have a number of specific questions that will help me make up my mind in terms of treatment. 

As far as I can see from reading the reserach and talking with "big time" doctors, the survival and biochemical relapse rates appear to be virtually identical with surgery and radiation. Does anyone disagree with that conclusion? Why?

What has been the experience of those who had nerve-sparing surgery or radiation in terms of sex? I am very concerned about impotence. Can you have sex? Do you need medicines? Is it satisfying? Does it feel the same? Etc, etc, etc.

Finally, has anyone had salvage surgery following radiation biochemical failure? If so, what was your experience? How terrible are the side effects? What do you understand to be your life expectacny?

Any help anyone can give me will be VERY appreciated. The diagnosis, which I've been living with for a bit over a month, has really thrown me for a loop. I know I have to make an important decision and I want to be as informed as possible before I do so.

Thanks to any and all who respond.

Posted 1/25/2007 1:07 AM (GMT 0)
Hey peffster - sorry that you're here - sorry that any of us are here. Since you must be here, I gotta' tell you that this is the place to be.

Most of the guys here are doing surgery of one type, or another. I am doing IGRT - radiation therapy. My urologist says that with my numbers (see below) the survival rate is the same as surgery. If you are going to do other than surgery, proton beam is probably the best. If spending a couple of months in Loma Linda is no problem, I'd think about it. MD Anderson is Houston has a new proton facility.

Regards,

Bill
Posted 1/25/2007 1:17 AM (GMT 0)
Hi Peffster,

Welcome to the web site that none of wish we needed. This forum is a great place to get information or just to talk to people wrestling with the same issues and concerns that you have both now and that you will have when you are recovering from and dealing with side effects from whatever treatment that you elect.

I personally chose the open RP surgery (done by Dr. Partin at Johns Hopkins) because:

#1: From my research, it is as good or better at getting cancer out as the other methods.

#2: You pretty much know right away if you got it all whereas with radiation you aren't sure for a long time if ever.

#3: They learn a lot of extra information about the extent and location of your cancer by actually removing and doing pathology on your prostate gland.

#4: After the surgery, most people are incontinent for 0-2 months but something like 98% are fully continent within a year. I think that a similar number of people have problems with incontience or painful urination after radiation but maybe not until a longer time after the treatment.

My surgery was 11/08/06 and my catheter came out (delayed from the normal 10 days) on 12/04/06. The catheter has now been out for about six weeks. I can retain urine while sitting and lying down. I am significantly incontinent when standing. This is very frustrating but I have been told that it is normal and that I will (98% chance) recover within a few months or less. I am really, really, really looking forward to the day that I am dry. 

#5: After surgery, most people have significant impotence / ED but many (not sure but I think 90% or more) recover within several months to a year back to approximately whatever level of sexual function they had before surgery. I think that radiation is similar or maybe slightly worse. I am not positive about radiation.

From what I read on this website (and there is a tremendous amount of information on incontinence and impotence) most men slowly regain the ability to have an erection but it takes three to twelve months. This is very frustrating but there is no real alternative as all treatments seem to cause some period of ED. At least there is a good chance that your sexual function will eventually return. Everyone says be patient. Good advice. Hard to put into practice sometimes though.

I would strongly encourage you to read Dr. Walsh's book if you haven't already done so, particularly since he might be your surgeon. He is certainly pro-surgery but covers all this stuff better than I can.

I highly recommend Johns Hopkins. They were a class outfit. They have an entire ward solely for patients recovering from prostate surgery. The nurses were excellent.

There is a tremendous amount of information on this forum that covers the differences between surgery and radiation (and a few other treatments.) There is also a lot of information on open surgery vs. robotic / laproscopic. Spend a few hours and read back over the threads for the last three months or so (at least that is as far back as I have made it so far.) You will find a wealth of information. I know that someone else asked your exact same question during January but I don't recall exactly when. Find that thread and you will get a whole bunch of responses without having to wait very long.

Maybe someone remembers which thread it was and can help us out with the name.

Good luck with your decision and your eventual treatment and recovery.

Ben

Posted 1/25/2007 1:59 AM (GMT 0)

Hi Peffster,

I'll spare you all the "sorry you're here, etc."  and just try to respond to a couple of your questions.

I can only speak for me.  I had the Divinvi surgery on 9/21/06.  Cathiter was a swift pain, but out in a few days.  I regained continence quickly and at four months, have only minor dribbling, once in a while, upon finishing urinating.  For some unexplained reason, some days are worse than others.   Otherwise, totally dry and NO leaking.

In reality, most guys my age have have some form of BPH and have this problem anyway, so I can't say that the surgery made it any worse.  It may actually be better, but not perfect.

You also seemed very concerned about the sexual aspect.  With a little help from the "little blue pill" sex was possible at about 6 weeks or so.  Occasionally, it doesn't work, but most times it is reliable, predictable, and yes, satisfying. 

I'm just now four months past surgery and looking forward to being less reliant on the pill. I never needed it before surgery.  However, once a guy gets to be my age, needing a little help from the pill isn't at all unsual.

So, all-in-all, in my case, I feel very fortionate and satisfied with the outcome and would choose the surgery again without hesitation.  I'm sure you know that everyone is different, and so much depends on the skill of your surgeon.

If you have other specific questions, ask again and I'll try to respond.

Good luck

Bent1

Posted 1/25/2007 5:51 AM (GMT 0)

hello peffster,

sorry to make your acquaintance.

All good questions, first of all you have plenty of time and owe it to yourself to do the research to make the best decision that is right for you. Read Peter Scardino’s book, he’s a straight shooter, Patrick Walshes book, Prostate Cancer for dummies, A primmer on Prostate Cancer, there’s lots of good books.

Keep in mind you have time , you don’t have to make a hasty decision, And if something doesn’t feel right its not, If it does it probably is, and most important its less important the type of treatment as the person delivering it.

I choose da venci laparoscopic because first of all, By removing the prostate you can know without a doubt whether of not all the cancer is removed.

and secondly, if after a number of years it returns, which it can, they have the option to do radiation and hormone therapy, but if you choose radiation first off, it does allow the option to operate and remove the prostate because of the scar tissue in the area.

Good luck and best wishes.   yeah

Posted 1/25/2007 4:54 PM (GMT 0)
hi peffster

After extensive research and networking, i decided on Proton Therapy which will begin soon. My two choices were robotic surgery with one of the top surgeons and Proton Therapy with one of the top radiation oncologists. After much thought and considering my age (notwithstanding that I am still healthy and youthful in many respects), I decided against surgery because I didn't want to take the risk of almost certain impotence (possibly permanent at my age) and possibly total or some degree of incontinence. If I were substantially younger, I might well have elected robotic surgery. I met with a top medical oncologist and the conclusion was that the chances of a potential cure were about the same for surgery, radiation and brachytherapy (seed implants), but the potential negative side effects vary greatly among the various treatments. Quality of life is very important to me--I would rather live fewer years and live them well without having to deal with treatment side effects that make life miserable. I concluded that Proton Therapy offers as good a chance of success as surgery (the supposed gold standard) with the potential for little or no negative side effects short and longer term. It is true with radiation therapy that longer term side effects may occur, especially some form of impotence. However, I believe with radiation therapy, viagra and other similar pills can overcome impotence in many cases which is not always true with surgery. The problem with brachytherapy is the potential for some nasty urinary problems (e.g., strictures of the urethra making is impossible or difficult to urinate without some medical procedures). IMRT photon (x-ray) therapy is the most sophisticated type of x-ray radiation today, but not as safe as proton radiation. Proton radiation enters and leaves the body at a low dose and the high dose is directed to the cancerous area; x-ray radiation enters and leaves the body at the full dose. It has more potential for damaging good tissue surrounding the prostate. I believe that IMRT x-ray radiation has the potential for greater negative side effects than proton radiation. It is true that with radiation therapy (either proton or photon), it will take up to two or more years for the PSA to get to its lowest level compared to surgery where the PSA goes to zero immediately. It is true with surgery that it makes future radiation treatments possible if the cancer recurs. It is not necessarily true that the prostate cannot be removed if the cancer recurs after radiation therapy if the cancer has not escaped the prostate capsule. Some surgeons just refuse to do the surgery, but surgeons at such top hospital as Sloan-Kettering in Manhattan have removed the prostate after radiation therapy if the cancer recurs, depending on the circumstances.

You might also want to visit these websites:

http://www.mskcc.org/mskcc/html/10088.cfm

http://jco.highwire.org/cgi/content/full/21/21/3979

The first website relates to Prostate Nomograms developed by Sloan-Kettering in New York City. You can input various information relating to your stage of cancer (i.e., PSA, Gleason Score, Tumor Stage based on DRE, etc.). The end result will give you 5-year progression free probability statistics comparing radical prostatectomy, external beam radiation therapy and branchytherapy.

The second website is an interesting study, again comparing the success rates of the various prostate cancer treatments and related side effects.

Keep in mind that EBRT (external beam radiation therapy) is an older form of radiation therapy and IMRT is the most sophisticated form of photon (x-ray) radiation today with the potential for fewer negative side effects. This should be taken into consideration when evaluating this data.

I suggest that you visit these websites for more information on Proton Therapy if you have not already done so.

http://www.protonbob.com/proton-treatment-homepage.asp

http://www.proton-therapy.org/

http://www.oncolink.com/treatment/article.cfm?c=9&s=70&id=211

Good luck to you in your decision--let us know what you decide.

Dave
Posted 1/25/2007 5:10 PM (GMT 0)
My husband opted for Brachytherapy.  In and out of the hospital the same day.  Radiation last for approximately 6 months.  The biggest side effect he had was fatigue - not really any urinary problems - the doctors prescibed Floxmax from the beginning.  His PSA is down to 0.61 and we're happy with that.

Things are good all around with us - there are medications like Viagara, Levitra and Cialis available and some doctors recommend them on a regular basis on a precautionary measure.

Good luck to you, "welcome" for lack of a better word and let me know if you have any questions regarding seed implant - that's the only treatment I can comment on although we considered ever one.

Posted 1/30/2007 6:43 PM (GMT 0)
Peffster & Loved Ones,               A    “Special”   Warm Welcome   to   You!   I know we can “all” make Your Journey smoother just by being here for you!   This is truly a great forum!!! ~ you have joined!   You are now part our forum family ~ a group of wonderful individuals who are so willing to share their journey with you!     It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!   Keep posting.... OKAY!!    We are all here to help you travel the path with prostate cancer.       KNOWLEDGE IS POWER... and POWER conquers fear YOU MAKE THE DECISIONS… YOU HAVE OPTIONS… ~ and ~ Your decision will be the right decision for you!!!     Our thoughts and prayers will be with you as you continue your search for answers… In Friendship ~ Lee & Buddy   “God Bless You”   It's a little prayer   ~   "God Bless You" ...but it means so much each day, It means may angels guard you and guide you on your way.     (Direct Link ~ just click on the title below and a new window will open!   Reminder … click on the REFRESH icon once you get there) Helpful Hints for New Members... Hope this helps you! :)
Posted 1/30/2007 6:57 PM (GMT 0)
Hi ~ Peffster,   Buddy & I invite you to visit our Thread:   Our Journey ~ Sharing is Caring   (direct link ~ just click on the title!   Reminder to click on the REFRESH icon once there)   It will give you insight into 1 of many journeys ~ on this forum.   Excerpts from Our Journey……              KNOWLEDGE IS POWER... and POWER conquers FEAR!!!!!                                         Your decision is Your Decision!!   I hope our journal entries will help you.     Ideal scenario: Prostate cancer detected early, treated, and cured.   Prostate cancer doesn’t have to be fatal.   If it’s caught early enough, it is completely curable.     One thing each of us must remember…. NO 2 SITUATIONS ARE THE SAME   Take a deep breath.... and know that there's a lot of us like you out there... and we've been where you are now.    All different kinds of lifestyles…   different PSA scores, different treatments, different incomes, different jobs, different health issues, all different ages, and most of all… MENTAL ATTITUDES ARE DIFFERENT. So take a deep breath and let this forum help you!!!   Remember… YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…   You will be in our thoughts and prayers… In Friendship ~ Lee & Buddy
Posted 2/2/2007 12:12 AM (GMT 0)
Hi,
Welcome. Since this is a forum where we can give our own beliefs and feelings about the disease and it's treatment, here is mine. It reflects only my reasoning about this with the information I had 6 months ago when I was making my decisions.

We seem to have similar stats, sort of. My top Gleason was 4+3, from a biopsy sample that was 40% tumor. I chose DaVinci robotic surgery because of the precision with which the doctor could dissect the gland and sew the urethra back to the bladder. I had read some reports that the robotic surgery has equal outcomes to the open surgery. My doctor gave me a quote of a 91% cure rate with the surgery, but only a 75% cure rate with any kind of radiation or the cryotherapy (and since it is like the cryotherapy in the way it gets the prostate out, the HIFU). These stats for radiation were different than what is usually reported --that radiation is equivalent to surgery. This equivalency may be correct and derived from updated stats, but I got my information only last June when I got diagnosed. But, 91 vs. 75 was a no-brainer for me.

I would definitely read at least Scardino's and Walsh's books. The take-home lessons I got from these led me to think that I would rather save the radiation as a salvage treatment, if the operation failed. With the gland, seminal vesicles, and lymph nodes removed, you know more about what you are dealing with. I am 57, a worrier, not a gambler, and have teen age kids. I did not feel comfortable trusting that the radiation would get everything. I wanted the beast out of me.

Also remember that what the biopsy says is sometimes an underestimation of what is really going on down there. Please read Hawkfan's recent thread about his post surgical pathology report. He would not have known about the extension of the tumor had he had beam radiation or seeds. Also, from the books I read, radiation doesn't necessarily spare you from having urinary problems, erectile dysfunction, or even bowel problems. The radiation may affect the nerves that control these, but the changes may come on slowly over time. As it was, one of my erectile nerves could not be completely spared, and the doctor was able to do a nerve graft during the robotic procedure. With regard to urinary continence, I would say I'm 98% recovered right now at 5 months out. With regard to Mr.Happy, I'm dead in the water right now, even with pills and penile suppositories (haven't tried the shots yet), but, again, it's only five months and most say not to expect any substantial return for 8 mos to a year.

As everyone says, you've got to do what's meaningful and comfortable for you, but, in my book, when they offer surgery to you, that means they think they can cure you.

Just some thoughts.

The best to you as you make these tough decisions. Please stay with us, and keep us posted.
dj
Posted 2/2/2007 4:10 PM (GMT 0)

Peffster,

I think you're getting good counsel on this thread and don't know that I have much to add, except this.

Reading on this forum is the first place where I have clearly noticed the different experiences of brachytherapy vs. da vinci surgery.  With brachy, some folks gradually lose potency or develop urination problems, and it seems there's nothing much that can be done to improve the ED.  With da vinci, everyone seems to go through a trial period of incontinence and ED, but with varying levels of how long it lasts. Some are lucky and it is measured in months, others less fortunate and it is measured in years. The differences seem to have to do (IMHO) with the experience of the surgeon.

If you're headed to Johns Hopkins, you have access to the best--question, why Dr. Walsh instead of Su?  I've heard that Su has 800+ procedures under his belt. That puts him up in elite territory, world wide.  He is on my short list of surgeons I'm considering.

Best regards for success in your treatment and vitality--

Markus


Posted 2/2/2007 9:27 PM (GMT 0)

Markus,

In your consideration of Da Vinci surgeons I would offer up to you my surgeon.  He is Dr. Joesph Smith and is the head of the Department of Urology at Vanderbilt University in Nashville.  You will not find his name mentioned like Menon, Tewari or others as Vanderbilt does not seek out publicity.  As to number of procedures he is moving in on 1,000 done in the last three years.  Before strickly doing Da Vincis he had done over 3,000 open types.  In fact, the reason he decided to do Da Vincis was because he did not believe that they would become the standard and he was out to prove that you could not get better results from the open.  He obviously is now convinced that the Da Vinci should be the standard unless the cancer is advanced.  I was told this week by a member of his staff that when you compare frequency of procedures that Dr. Smith is now doing more then Menon and others he just has not been doing them as long.  He does 9 to 11 a week.  Because of his demand he is backlogged by three to four months.  I waited three months.  I understand that Vanderbilt may consider buying a second Da Vinci robot.

Tamu

Posted 2/2/2007 9:58 PM (GMT 0)

Tamu,

Your recommendation is much appreciated and Vandy can be pulled into my network so its covered by insurance.

Right now I'm looking at Menon, Patel (Ohio State) and Su at Johns Hopkins. One attraction of Menon is his use of the term "veil of aphrodite" and from what I have read on the net it sounds like he may have a unique understanding of the nerves and therefore some techniques for nerve sparing that others do not have. But I can't tell if it is something real or simply a marketing buzzword.  Do you know?

My choice of surgeon may well be driven by who is available first.

Anyway, thank you for the tip. Much appreciated.

Markus

Posted 7/27/2007 7:57 PM (GMT 0)
New to Forum - just diagnosed on Tuesday. Age 66, PSA 2.7, Gleason 6 (3+3). Have spoken at length with my Urologist. After extensive reading and discussions with friend who is former Chief of Urology at prominent hospital I have decided to go with Robotic procedure. And this is what my Urologist and friend would do if they were my age with my current state of health. Very active and expect to live out my life expectancy at the very least. My biggest issue as you all have had is whether or not it is surgery , who do you chose as your doctor. I have several doctors who I am going to see including at U of Penn and Jefferson in Philadelphia and at Washington U - St Louis. I cannot decide who to consult with at Johns Hopkins. Doctor Su is booked until end of year just for an appointment. I welcome any input from you all on your recommendations. I live in Phila area but want to go to the best available doctor. Is it practicable to have surgery out of town with post op needs - your experiences would be appreciated. Thanks.
Posted 7/27/2007 8:48 PM (GMT 0)

Hi peffster:  I'm sorry you’re in this club, but glad you found this site. You will receive good advice here.  As we all know, one of the most perplexing things about PCa is choosing the therapy -- there are so many choices.  And yes, statistically, radiation and surgery offer the same long-term success results if your PSA, Biopsy and Gleason scores are within certain parameters.  In my case, I chose surgery (Da Vinci Robotic).  If I couldn't have gotten the robotic, I would have gone with the radical retro because like many others here, I needed to know what was going on in there -- RIGHT NOW.  I am a worrier and if I'd had radiation therapy I would tend to worry forever.  In fact, I consulted with a very-highly-regarded radiation oncologist and he encouraged me to consider surgery, considering my age and numbers.  He’s a year younger than me and said he'd look into surgery, if he were in my shoes.

I have a friend (an eternal optimist) who did brachetherapy in 12/05 and he is fine with it.  He's never seen that >.01 PSA -- but he's a "glass is half full" type of person and is doing great.

The only other concern I had about radiation was that I would have some loss of bowel control.  I figured wearing a pad for urine is one thing, but didn't want to deal with losing control in the bowel dept.  But again, I'm a worrier.

Do your research.  Listen to what the docs have to say.  Then, think about what's most important to you from a post-surgery, quality-of-life standpoint.  The right decision will come.

Best to ya,

Tom

Posted 7/28/2007 6:03 PM (GMT 0)
Hi ~ Peffster, Since your thread was started on January 24th..and it was your only posting.... We would really like to hear from you!!! Take care ~ In Friendship ~ Lee & Buddy
Posted 7/28/2007 9:24 PM (GMT 0)

Hello peffster,

You already know that the different PCa treatments will yeild the same high % cure rates so it comes down to the doctor, and your own personal preference. Some of us are opposed to the idea of surgery, and some feel strongly about the presence of the PCa in our bodies. If you're in good physical condition it's likely that you will experience a quicker recovery regardless of the procedure.

I had the daVinci procedure because I wanted to get that PCa out of my body asap. The surgeon we selected had performed over a thousand operation prior to mine, and we had the priviledge of speaking to a former patient to hear his endorsement. The recovery was exactly what the surgeon said it would be, and I feel the choice was right for me. I must add that I'm bull-headed, and not inclined to heed warnings so I did suffer some setbacks (doctors can not predict foolish behavior). This has made me a good lesson for others who might think the doctor's cautions are over stated.

I wish you good luck on your decision,

Glen

Posted 8/4/2007 11:10 AM (GMT 0)
Not sure if this post is helpful by now. I would assume that the poster has already had a procedure done. But in case he hasn't, I would just mention that my brother had PSA 6.0 ,Gleason (4+4)=8 and RRP followed immediately with 36 radiation treatments. He was <0.1 for 8 years until a month ago and his psa went to 1.3 and a month later 1.5. He's now monitoring his psa velocity . He as well as I believe radiation is over marketed an isn't an effective tool for getting all the cancer. His margins were clear but because his cancer had penetrated the fatty tissue the Doc wanted to do radiation as a precaution. Obviously it didn't do the job.

Ron
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