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Looking for men to talk to about experience with Robotic surgery

mcin777
Posts: 25
Joined: Feb 2013

I was diagnosed after a biopsy in October 2012 with cancer, gleason score of 6.  Doctor took 6 pieces.   I was told that I was a good candidate for waiting and watching.   I had a biopsy in Jan 2013 and now have a gleason score of 7 3+4.  I have no idea of what type of treatment is best.  I suppose cutting the cancer out is better than other options.  If cancer has spread outside the prostate only surgery would be the way to know...right?

If I go with robotic surgergy, what kind of recovery can I expect?  What consequences?  What if they take the nerves out...does that mean no orgasm ever again?

Thanks for jumping in and helping me.

mcin777@aol.com

 

Jim

ob66
Posts: 214
Joined: Apr 2010

It is tempting to respond to your query, but a response would do you no good. You have given one parameter----Gleason 6 to Gleason 7 in a period of 4 months. i am not sure why I even understand why two biopsies were done 4 months apart, let alone the results....I could suggest a lot of things, like are you in the best hands, but I really don't know that. You need to provide tons of info, even tho' it may force you to look into your own cancer more closely. Ask yourself, how did you go from a "watch" to "a daVinci" in four months. Or why even a daVinci, which I had? More info and more help can be afforded. 

ob66
Posts: 214
Joined: Apr 2010

Apologies for a double entry but this website is so slow that when you hit submit, it makes a snail look like a rabbit....

Swingshiftworker
Posts: 620
Joined: Mar 2010

I'm a little confused as OB66 is as to why you had 2 biopsies so close together and why you are jumping from active surveillance ("watchful waiting") to surgery in so short a time, but I will address your question by stating that "cutting out the cancer" is NOT necessarily the best choice and urging you to take the time to do your research before making a treatment choice.

I didn't have surgery because I didn't want to subject myself to the risks involved with that "treatment," which are substantial.  You can just troll the recent threads here to see some of the worst things that can happen, including permanent ED and incontinence and subsequent surgeries involving the "sling" or "artificial urinary sphincter" and the additional problems they can also cause which all originate from the choice of surgery for treatment.

For an informed discussion of the problems w/surgery, I suggest you read the following article:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects

Of course, many men have undergone and recovered from surgery w/o any major problems, but all of them had some period of time (usually 1-2 years) when they had some ED and incontinence from which they had to recover.

There are a lot of alternatives to surgery for treatment.  All of them are radiation based and include (but are not limited to): CyberKnife (SBRT), IMRT, IGRT, LDR BT, HDR BT, PBT, 3D CRT, etc. I suggest that you Google the acronymns listed to read about each of these methods.  The side effects of radiation treatment varies w/the method used but the side effects are generally not as serious or prolonged as they are for surgery.  Furthermore, when surgery fails as it often does, the followup treatment is radiation.  So, why undergo surgery, when you may have to resort to radiation in the end anyway?  That never made any sense to me, which is why I chose radiation over surgery.

I received Cyberknife (CK) treatment 2 years ago w/o any side effects whatsoever, as have other men here on this forum, which is due to the accuracy with which CK is delivered.  IMHO it is currently the best method available to treat early stage prostate cancer, which is what you have and you would do well to consider it.

Since your doc has recommended active surveillance, you have time to consider which treatment would be best for you.  I did 2 months of extensive research and reading to decided what method of treatment I wanted to receive and you need at least that much time to do so as well.

Good luck!

 

 

 

mcin777
Posts: 25
Joined: Feb 2013

Please forgive me if I stated the biopsy information incorrectly.  I had a biopsy about 10 years ago and it was clear of cancer.

I have followed my psa very closely over the years.  I have had a total of four Urologists over the last ten years.  In September of 2011 my PSA jumped from about 5.2 to 8.  The Urologist did the normal rectal exam and told me I was fine.  I was not happy with "you are fine" so I went to another Urologist you likewise did the normal rectal exam and said "your prostate feels perfectly normal but since you had a jump in PSA you should have a biopsy".  In October of 2011 I had the biopsy.  

The Dr took 6 snips and sent them off the a lab.  The report came back that I had had GS 3+3 on the right side only.  This Urologist is a surgeon.  He suggested I take time to think of about my options.

My audiologist Dr. recently had his prostate removed by a Dr Lowe in Portland...a Dr who  does robotic surgery.  He does about 220 a year and has been doing them for many years.  I went to Dr Lowe and he suggested that I was a good candidate for waiting and watching.  So that is what I did.  He too did not find anything wrong with my prostate doing the normal exam.

Now a year later (January 2013) i went back to Dr Lowe for the recommended biopsy which they encourage people to do one time after being diagnosed with prostate cancer.  He took 12 samples and sent them off to the lab.

Prior to the biopsy, my PSA was 4.98.  The lab reported back that 4 Biopsy cores tested positive for cancer.  8 did not.  In fact the cancer that did show up was on the left side.  Nothing showed as cancerous on the right.

The Dr. encouraged me not to go more than 6 months before choosing a treatment method.  My Gleason score this time is    3+4 = 7.  The volume of cancer is 11.5.  He said that the cancer is "intermediate" or moderately aggressive.  Volume is increasing.

I will most likely have another lab look at the results and I will seek another Urologist for his analysis of my current results.  

For those of you who have been where I am in the process...what suggestions do you have for me?  In the end is it all a crap shoot in terms of the type of treatment and the consequences?  It seems that radiation would be the most harmful.  Also with seeds or other types other than a form of surgery, how the Dr know if the cancer has spread outside the prostate.

I appreciate any help that you might give. I thank yoiu advance for your information.

 

Jim

 

 

Swingshiftworker
Posts: 620
Joined: Mar 2010

If your cancer has migrated beyond the prostate, surgery is generally NOT warranted because that will not kill all of the cancer and there is no need to undergo the trauma of surgery.  Radiation treatment (usually IMRT) combined w/hormone and/or chemo would the the preferred course of treatment.

Radiation directed to the prostate will theoretically kill all of the cancer cells there.  Hormone therapy will inhibit the production of testosterone and again, in theory, will keep your PSA level in check in order to reduce the possibility of additional cance growth from the prostate.  And, if its clear that the cancer has migrated beyond the prostate and has accumulated elsewhere, you can hit it w/additional radiation at that site (or sites) and can resort to chemo (as a last resort) to try to arrest any cancers present elsewhere in your body.

However, this is a WORST case senario and the likelihood, given that you are a Gleason 7 and PSA 5, IMRT w/hormone would be the most likely recommended treatment.  There are a lot of threads on this forum about that kind of treatment but it's premature to consider it in your case because you have no evidence that the cancer has actually migrated beyond the prostate yet.

I do not know how they calculated the volume of your cancer but there are scans that can be done that measure the presence and location of the cancer quite accurately.  It's a combined MRI/MRSI scan which is spectrographic and measures the amount/location of choline (which is an indicator for cancer) in or near your prostate.  CAT and Bone scans are commonly ordered to see if the cancer has spread but are not very precise.  The scan you want is the MRI/MRSI scan.  It will tell you EXACTLY where the cancer is.  Ask if you can get it.

Good luck!

hopeful and opt...
Posts: 1282
Joined: Apr 2009

"I will most likely have another lab look at the results and I will seek another Urologist for his analysis of my current results"

It is very important for you to have a second opinion of your slides by a world class" expert pathologist that specializes in prostate cancer, since determining a Gleanson socre is very subjective, and your treatment is based on this.

Apparently your cancer is found in two lobes; there are four cores of 3+4=7 on the right side( queston: of these four core what is the percent of each core that is cancerous), and one core of 3+3=6 on the left side. Treatment is based on the more aggressive number which is the 3+4+7, moderately aggressive

As Swing mentioned to you it is important to have a further diagnostic test, that is an MRI(with a tesla 3.0 magnet) which will give indication if there is extracapsular extension . Your treatment will be dependent on this, so if there is extracapsular extension surgery, and other localized treatments iare not appropriate

ob66
Posts: 214
Joined: Apr 2010

       Generally speaking what swingshift has inputed is pretty much right on. You must realize every case is different, and they do not follow an arbitrary mode of treatement. There are certainly recommmended treatments for different situations, but the reason I chose to respond initially was that you asked about a treatment option I used (daVinci).

       My experience, and my recommendations, will be slightly different that swingshifts, only because it has so far worked for me (close to four years). Diagnosed May 6, 2009---Gleason 7 going in with 4 of 12 samples positive for CA. Had daVinci in June after all the diagnostic tools (scans, etc.) to detect whether or not there was CA outside the prostate. Not detected, but the tests are not bullet proof. Turned out after the prostate was removed I was Gleason 8, Stage 3b on path report. Included seminal vesicle on one side involved.

       Ten months later, with the use of ultrasensitive testing, my PSA went up from 0.05 to 0.07. My urologist wanted to be super aggressive (thank God) and had me have RT immediately along with lupron. I did so in July and August of 2010, and stayed on lupron for two years ending with the last 4 month shot January 2012. Well in January 2013 I had my first ultrasensitive test after the lupron had cleared (tested testosterone and it was normal), and my numbers were undetectable. Yes, less than 0.02. So for now I am a very happy camper with the course of my aggressive treatment. I have gone on a total dietary change (no red meat, no dairy, low sugar), and have always excercised extensively.

      Hope this input helps. Maybe not conventional, but working to date. I do not believe there are blacks and whites with this ugly disease, but there are certainly parameters that act as a guide. Do your homework. There are unbelievable people on here with a wealth of knowledge----VascodaGama, Kongo, mrspjd, and on and on...Ask questions. People want to help. We all share an ugly!

mcin777
Posts: 25
Joined: Feb 2013

Thanks ob66.  I will let you know what the MRI shows.  What impact did the RT have on you?  What is lupron for?

ob66
Posts: 214
Joined: Apr 2010

Lupron is an estrogen simulating drug that decreases the testosterone in your body (effectively a drug induced temporary castration), which acts as a food source for cancer cells. It is given for varying lengths of time depending on one's particular situation, and is given either in a one month, two month, or four month dose.

JEHJR's picture
JEHJR
Posts: 25
Joined: Feb 2013

Jim, it has been 4 months since I had my prostate removed. Just reveiwed my second PSA post op and it is undetectable. My surgeon has told me so far I am text book.

I am 58 and work construction. PSA 2 yrs ago went from 1.9 normally to 7.2 in one year. Biopsy came back 1 out of 12 questionable. I waited 2 years, PSA went down 2.1 and I had another biopsy. 13 needles 1 core came back 20%, Dr found no irregularities with shape or size. Dr sent the core out for a F.I.S.H. test and it confirmed a moderately aggressive form of cancer.

I chose the robot and surgery went excellent, wore a guard for 3 months, erections returned within 24 hours post surgery. I have read a tremendous amount of material and watched you tube to the Nth degree. The whole robot thing I found facinating only wish I had paid to have it recorded. They gave me an IV and the next thing I was in a room listing to classical music. Went home the next morning, I have read the horror stories and never experienced one bad thing.

mcin777
Posts: 25
Joined: Feb 2013

Thanks JEHJR...I pray that I have the same success as you.

every now and then I get little twitches of pain....not too bad but noticeable or I get a burning sensation in my goin.  Could this be cancer having spread?  Anyone else have physical symptoms?

Ken Life Is Good
Posts: 5
Joined: Jan 2013

Hi,

I had my surgery Oct 31st 2011, My hospital stay was less than 24 hours, no blood transfusion. The second day at home I was able to get out of bed on my own. I was driving the second day. The catheder was removed at about ten days. I was continet from the time the catheder was removed and have done no kegels before surgery or after. I was off pain pills after 4 days I was 62 at the time and was back to work as a working remodeling contractor at four weeks. I am impotent, but have no idea if it is from the surgery, radiation or lupron. Being impotent is not a concern for me, just happy to have the undectable psa readings. Each experience is different and the outcome that you have will depends on many factors, your body, the degree of cancer, the doctor that you choose. All treatments can have side effects and the cancer and treatment will change you life. But I wish you good luck.

Ken

tk51
Posts: 3
Joined: Jul 2011

First of all like all said before - every case is different as well as outcome but I wanted to let you know my experience which I am sure is not the norm.

My Information:

PSA: 4.9 (Initial test performed Feb 14th 2011)

Antibotics taken for 6 weeks prior to next test.

PSA: 4.9 (March 1st 2011)

April  13th – 12 Biopsy of Prostate taken

April 20th – 6-12 Biopsies had cancer, Gleason Score of 7, Stage IIB

April 26th – Bone Scan/Cat Scan

June 3rd – Hospital Testing/ EKG /Registration

June 7th – EndoRectal MRI

June 14th 2011 – Robotic Prostectomy Surgery performed

Feb 15th 2013 - Still wearing daily pads (doing kegles every day 30 times ea- lying,standing sitting) - getting a little better

1st 8 months severe ED - started to take injections of TriMix (as that seems to kick into gear) - mild ED now.  

 

 

danknj
Posts: 19
Joined: Oct 2012

Jim

Before you make a decision on surgery or not, please look around, explore all options and by all means investigate your surgeon. Find out how many times he has doen the surgery. I did not. I had a 9.5 PSA gleason score of 7. Had the surgery one year ago. Three months later had some blood, surgeon did a scope, said I had scar tissue (very rare) he said. That night I could not go to the bathroom at all. Ended up in emergency room knocked out getting a cath. Seven days later surgery to remove scar tissue. Surgeon told me he found a surgical clip stuck in my urethra. Again was told this is (very rare). Went back 4 weeks later, surgeon did another scope but forgot to turn the saline on. Did it dry. Said scar tissue was back. The next day I could barely walk. Told the surgeon I was done with him. Cancer came back now I'm stuck. Got another surgeon. I STILL go through about 30 pads a week. Then I found another guy going threough the same exact thing I am. Funny thing is, he had the same surgeon. So two (very rare) cases. Point I'm trying to make is CHECK out your surgeon, get a second and a third opinion. As you can see there are many men who return back to normal in very little time. Pleas check it out, I was told by my primary that I might just be a statistic. Nice huh?Good luck and do some research.

 

mcin777
Posts: 25
Joined: Feb 2013

Hi danknj,

 

Soooo sorry to hear of your experiences.  You are not from Portland are you?  I don't want to get the Dr. you had mentioned.

I pray that your cancer gets completely removed and that you stay in remission.  I so appreciate you sharing your experience with me.  I am in the process of getting a second opinion and an MRI.  It sure pays to do research.

 

Jim

neratliff
Posts: 1
Joined: Feb 2013

here is what my dad's surgeon, very prominent one in san Francisco, told us:he could not get good results with robot so he stopped and there are only 4 surgeons in the country that can do properly with robot.

VascodaGama's picture
VascodaGama
Posts: 1516
Joined: Nov 2010

Jim (MCIN777)

In reading your posts it seems that the doctor(s) looking into your case for the past ten years and the one treating you now have being fair with their recommendations. In fact it seems that you have been following the “norms” of Active Surveillance.

Now with a diagnosis of Gleason 7, you need to concentrate on a treatment that fits your desires. In choosing something you need to consider your age (?), other health problems (now existent or that may come along), your family wishes and implications with your job/business.

The side effects are an important factor (do not think that the worse happens only to others) and do not try a “quick” fix. PCa will change your life and it will keep you checking for recurrence in the years to come.

I wonder which doctor Lowe you are talking about but if that is Dr. Bruce Lowe (a onco-urologist) that writes for the Journal Urology, you are in fact dealing with an experienced robot operator that is very much against radiosurgery. He is a specialist in cryotherapy (freeze of prostate) and an advocate for“removing the prostate” as “the most effective means for successfully treating prostate cancer".

Surely you may receive a biased opinion from such doctor and for that you do better to get second opinions from other specialists. A medical oncologist may provide you with a better unbiased opinion.

I would recommend you to prepare a list of questions to expose to the doctors you will be visiting. Do not worry if the list contains odd or weird questions. Do not be shy. If not satisfied with an answer you may call their office to get an explanation.

 

Proper diagnosis, modern facilities (and equipment) and experienced team of care givers may assure you better outcomes. You do have time to look for the best. Do not rush and proceed coordinately.

I recommend you to get the book “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition), which may help you to understand differences between the radical treatments of surgery and radiation. These are the ones that can provide "cure".

The writer a famous surgeon Dr Walsh is biased through surgery but it gives a good account of the radiotherapy approach.

 

You got excellent opinions from the above survivors now you need to put the “pieces” into place.

Please read this comment by Kongo posted in another thread; http://csn.cancer.org/node/247821#comment-1290680

 

Wishing you luck in your journey.

VGama

mcin777
Posts: 25
Joined: Feb 2013

VGama,

Thanks for shariing your thoughts.  I just turned 70.  I am a young 70 and as far as I know in decent health.

Bruce Lowe is my Urologist and he did not recommend the freezing of the prostate.  He cam recommended by another physician who used him to remove his prostate.  I suppose in realtiy I already know that I will choose Robotic surgery.  

Everyything that I have read about Chemo and radiation indicates that there is a risk that cancer cells will mutate and spread elsewhere...becoming resistent to treatment.  My biggest concern has to do with the cancer spreading outside the prostate.  I hope that it has not.

My guess is that had the Dr. who did the first biopsdy in October of 2011 taken more than 6 samples, cancer would have been found in both sides and surgery for me would have been a thing of the past.  I'm praying that I did not wait too long.

Again, thanks for your concern and advice,

 

Jim

hunter49
Posts: 199
Joined: Oct 2011

Hi Jim and welcome to the party.  I had a PSA test in August of 2011 and it went to a 4.1 from 2.54 29 months earlier. Tried meds and 3 weeks later went ot 5.4 had biopsy 1 of 15 posative 3 +4.  Had surgery and path came back clean nothing outside gland and no posative margins. However, was upgraded tO A 4+3 and itwas in both lobes.  PSA is undectable as of January so far.  Surgery was not bad never took anything other than Tylonol and was home day after surgery.  Was sore from the gas but walked around and took lots of stool softners and water.  Did not want any issues there.  Catheter came out after 5 days and dry out of the gate except for little dripples from bladder spasms whiched stoped completelyafter 45 days.  Did lots of keegles before surgery fro 2 months.  ED wel it worked fine after 2 weeks but then stopped and started up aagain after about 8 months.  Did pump 2 times a day to prevent atrophy and meds from time to time. It is wierd to have dry orgasms but after surgey orgasms for me are much more powerful and longer.  Also, after you have one I never seem to loose an erection which keeps wife happy.  Although, she misses no ejaculation we work around it. Overall I am glad I did surgery I was 49 and knew exactly what I had to deal with.  You need to find a surgeon who did a thousand or more and has the same team for a long time.  Get second opinion on slides from Hopkins.  I do not think you would be an AS canidate given a G 7.  Good luck and do what you feel right with. Oh by the way you will loose some size from uretha resectioning.  Nothing too bad but I have heard some horror stories here. Wife has not noticed anything different so that is good.

mcin777
Posts: 25
Joined: Feb 2013

Hunter,

 

Thanks for sharing.  I have had ED for a long time.  Most likely will only be worse after surgery.  I did have the Dr. send slides to John Hopkins and I am now waiting to hear from them.  I have an appointment with a 2nd Dr scheduled for Mar. 18th. 

Thanks again for the input.

 

Jim

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