Just Diagnosed.....

jerry 1957 said:

Robotic Assisted Surgery

Ron,

I had a robotic assisted surgery a weeks ago in MSKCC . I am 57 years old and in good physical shape.   They warned me about possible incontinence and probable ED for a few months, up to two years.

Four weeks later I have no incontinence and am back having sex. I use Viagra but other than that I can function fully with no issues (even my morning erections are back..) ...So while there are more fun things to do in life than having your prostate removed , recovery at your age should be relatively fast and hopefully you'll be back to your normal life cancer free within a few weeks. Just make sure your surgeon is very experienced and with has an excellent reputaion and you will do very well.

Good luck

 

Jerry,

Your post here rang home for me, and since this Forum is largely about the "real-word" experiences that guys have, I wanted to mention my experience following surgical removal in January (this year). 

After my cath was removed a week following the surgery, I did not know what to expect, and went home in Attends (adult diapers).  Urinary issues were so limited that I quit wearing diapers two days later, going on just a pad for male incontinence.  I have since discontinued that and wear only a thin liner, since occasionally after a cough or sneeze I will have a small amount of leakage.  So, while I know my experience was atypical, incontinence was hardly an issue at all for me, except for the first ten days or so post-surgery. I am thankful that it went so well. We are almost the same age, since I am 58.

ED for me 2.5 months out is still an issue, but I do have limited arousal, but have never taken Viagra or any other med.  My uriologist told me that ED resolves much more slowly than incontinence, and could take a year or more. He has me scheduled for a "Trimed" injection soon, but I may cancel that appointment, and see how things work out naturally.

By all of what the Journal articles and books state, our experiences are not the norm, but it does show that RP can be less devastating than many suggest, and it is critical to find an experienced surgeon. Mine has done over 900 da Vinci RPs, and I was blessed to have him available. 

I have to wonder: How long is his yacht ?

max

Uh_Oh said:

Great recovery for you!

Thanks, Jerry.

It looks like things are going well for you. I'm likely going to call and schedule my surgery very soon, possibly next week and for sometime in June. Seeing stories like yours is encouraging. While I'm relatively young at 51, I'm hoping that my age will be an advantage in my recovery and getting past ED and incontinence. 

Looking at my options, I don't think that I, personally, can comfortably live my life knowing this thing is inside of me, especially realizing that just because the biopsy only found 2 samples that were PCa, that doesn't meant there isn't more that it missed, and, I also realize that many times the pathology report upgrades the Gleason Score after removal. I just watched my stepfather succumb 11 days ago after 6 years of battling this disease, and his death, I felt, was unnecessary. He didn't get good advice from his primary care doctor when his PSA tests first became elevated and was told "sometimes they go up and down" and was never referred to a Uro until he had other problems and a DRE found a lump. After the robot removed his prostate his pathology report indicated a Gleason 8. I'm not quite convinced his surgeon was particularly experienced, either, and may not have gotten all that needed to be removed. It had escaped his prostate and had gotten into his bones. He didn't have a family history of PCa, but he was likely exposed to Agent Orange in Vietnam. He said "they used to dump that stuff on our heads!" He had an agonizing last couple of months and he and my mom went through hell. It was difficult to watch.

So, I just don't think I can risk it. And I know it would kill my mother if things went badly for me. Of course, everyone feels differently about what treatment is best for him, but I think I'll have constant worries if I keep it in there. And I already know what my wife wants! Reading good recovery stories like yours is very encouraging. Thanks.

 

Uh_Oh,

Assuming you do get surgery, use a surgeon with a lot of RP experience.  The unofficial criteria for being "experienced" with robotic RP is 200 surgeries or more.

Also, ask the surgeon directly if he routinely practices erectile nerve sparing, when possible.  If any surgeon, after they open you up, finds perineural involvement (cancer growing out of the gland along the nerve fibers), they must cut the nerves out, but seemingly minor cases, with low-risk numbers like yours, do not normally reveal this problem.

The surgeon may not have done anything wrong in your stepfather's case, although it may well be that he was not a good candidate for surgery to begin with. Metastatic disease that has gone to the bone is not treatable surgically, so if that was the case, there was nothing he could do at that point.  All of this is speculative, of course.  You would need full pathology reports to evaluate his case.  I am sorry about his passing.  I have watched two dear friends die of PCa in the last several years, and although not relatives, I somewhat can relate to your experience.

I hope your decisions are all the correct ones, and that all goes very well for you,

max

Uh_Oh said:

H. Ballentine Carter--over 3500 RPs

He's a Distinguished Professor and the Director of Adult Urology at Hopkins and does "open" via the lower abdomen rather than robotic. According to the Johns Hopkins Brady Urological Institute site, he's seemed to have had lots of "practice!" LOL! I really don't have an issue as to how it's done, as long as I'm comfortable with the doctor. The robot seems to take quite a bit longer, and I don't know how I feel about being knocked out that long. Dr. Carter told me the procedure would "only" be about 1.5 hours long. One night in the hospital, and 9 additional days with the catheter, which I can remove myself--if I'm brave enough! 

He's assured me at our last meeting that his goal is to spare the nerves. As my 3T MRI showed nothing outside of the gland, then that's what I'm hoping for.

From his Bio:

"A patient undergoing the surgery described above could expect to have a carefully performed operation with the best chance of total cancer removal using visual magnification and tactile feedback rarely requiring blood transfusion, and that can be performed in just over an hour. Men are discharged from the hospital on the day after the procedure."

 

Hope it's right!

Uh-Oh,

There is a lot of relief in deciding what treatment to go with, so I know you must feel better having made the decision.

Yes, you certainly have an experienced guy.  My da Vinci surgery this January took 2.5 hours.  I remember waking up in recovery, and feeling for a long time like I was on another planet.

Dr. Peter Scardino, chief of surgery at Sloan-Kettering CC, writes in his Dr Peter Scardino's Prostate Book that there are reasons to prefer open incision RP, and I believe that the open technique is what he himself uses.  I recall for certain that he mentions the value of touch in surgery.  Robotic surgeons brag that the incision is smaller with the machine, but when you add the lengths of my five incisions, I suspect that they together represent MORE cutting than a single entry point would represent (??).  Regardless, I was quite happy with the da Vinci experience, but understand that open technique has advantages as well

Good luck with everything,

max 

hopeful and optimistic said:

Genomic Test

 

This new  gene test developed at the Cleveland clinic and tested at UCSF, at a molecular level,  looks at 17 type genes found in your biopsy, and gives indication of how aggressive the cancer really is..

Your biopsy showed a Gleason 6....some Gleason 6's are wolves while most are sheep..........this test will tell what yours really is.

The results of this test can affect your decision for AS, or other treatment

 

Here is a discussion about the test

 

https://www.youtube.com/watch?v=Nkc7qfS-mcE

Best

Just expanding a bit on the previous post. This is from the company website:

About the Oncotype DX Prostate Cancer Test and Early-Stage Prostate Cancer

The Oncotype DX prostate cancer test is a standardized, validated biopsy-based test that measures the level of expression of multiple genes across multiple pathways that predict aggressive prostate cancer, overcoming issues related to tumor heterogeneity, biopsy under-sampling and under-staging to substantially improve individualized risk assessment at diagnosis, prior to treatment intervention. Further, the Oncotype DX prostate cancer test allows men with apparent low-risk disease who are identified to harbor higher risk features to have greater confidence in the decision to undergo potentially curative therapy. Based on the biology of each individual cancer, the information provided by the Oncotype DX prostate cancer test can help patients and doctors determine the most appropriate treatment.

Uh_Oh said:

Thanks

I appreciate the thoughts here. I guess my main concern is the "not knowing" if the cancer is worse than the biopsy was able to find. I'm mostly coming into the acceptance that I'll just have it removed. While not particlarly happy with that decision, I feel it's less worrisome to me than always thinking about this thing inside of me. I haven't made the appointment yet, cuz I'm a big CHICKEN!!!

if you are alsways going to think about a cancer inside your body, AS is not for you.............For the first few months I focused on the cancer, now I just go on with my life......this is my seventh year............I believe that management of AS now a days will be sufficient so that I can seek the treatment that I might have, seven years ago when I was diagnosed, if that time ever comes, which to be honest at this point, I doubt.

If you decide on an Active treatment , there are other treatments other than surgery.....generally radiation especially SBRT is more effective with less side effects than surgery.

I am a 46 y/o who was diagnosed 9 months ago.

I was not interested in AS because of my relatively young age.  With possibly 5 more decades of life ahead of me, I felt like it was probable that my disease would progress to the point that chances for cure with therapy could be reduced.  But that was a decision my wife and I made based on our philosophy and situation.  Your perspective on this may be different, but is just as valid.

The good news is you have some time to think.  A cancer diagnosis is shocking and can provoke a knee-jerk response to "get it out of me!"  That is understandable, but premature.  You have the luxury of time, so you should use it.

I decided against surgery because I didn't want the side-effects (penis pumps, ED drugs, incontinence pads) or downtime from my job or lifestyle (I exercise religiously; surgery would have put that on hold for about a month).

After extensive conversation with Dr. Katz in NYC, and against the recommendation of my urologist, I chose CyberKnife therapy.  It has been wonderful.  Mild acute side-effects for a couple weeks consisting of minor pain with urination and mild pain/blood with bowel movements, but I was told to expect that.  Once that resolved I have had ZERO side-effects.

Anyway, get multiple opinions from both urologists and radiation oncologists, including ROs who offer CyberKnife for prostate cancer.  Then make the decision that YOU are most comfortable with.

Uh_Oh said:

Thanks, schin

While I don't know what your "stats" so to speak were before you opted for CyberKnife, I'm curious as to what were your urologist's concerns were to recommend against it? And what were you told about treatment in the (unfortunate) case there's a return down the road?

Thanks,

Ron

Here's a link to the thread that contains my stats.  http://csn.cancer.org/node/286579

My urologist had no solid data against CyberKnife, except to say that he didn't know much about it, considered it experimental, and that choosing it was a risk given that surgery is proven.  CK is most definitely NOT experimental and long-term outcomes and side-effects have been published.  For low and intermediate risk guys, CK is equivalent to surgery in terms of efficacy, and side-effects are generally less.  Plus, with CK there is essentially no interruption in your normal life while you recover from surgery and then deal with surgical side-effects.

Surgery is generally not an option for any radiation patient with recurrence in the gland, but cure rates with CK for guys like me are 97-99% (equal to or better than surgery).

If you would like I would be happy to give you my CK doctor's email address.  He is arguably the most prominent prostate CK doctor in the world, and corresponded with me by email and phone extensively before we ever decied to meet, all at no charge.  I am certain he would do the same for you.  Just click on my username and send me a message.

hopeful and optimistic said:

SBRT, 7 year study, quality of life and toxicity

http://csn.cancer.org/node/291691

 

OBJECTIVES: Stereotactic body radiation therapy (SBRT) yields excellent disease control for low- and intermediate-risk prostate cancer by delivering high doses of radiation in a small number of fractions.

Our report presents a 7-year update on treatment toxicity and quality of life (QOL) from 515 patients treated with prostate SBRT.

METHODS: From 2006 to 2009, 515 patients with clinically localized, low-, intermediate-, and high-risk prostate cancer were treated with SBRT using Cyberknife technology. Treatment consisted of 35-36.25 Gy in 5 fractions. Seventy-two patients received hormone therapy. Toxicity was assessed at each follow-up visit using the expanded prostate cancer index composite (EPIC) questionnaire and the radiation therapy oncology group urinary and rectal toxicity scale.

RESULTS: Median follow-up was 72 months. The actuarial 7-year freedom from biochemical failure was 95.8, 89.3, and 68.5% for low-, intermediate-, and high-risk groups, respectively (p < 0.001). No patients experienced acute Grade 3 or 4 acute complications. Fewer than 5% of patients had any acute Grade 2 urinary or rectal toxicity. Late toxicity was low, with Grade 2 rectal and urinary toxicity of 4 and 9.1%, respectively, and Grade 3 urinary toxicity of 1.7%. Mean EPIC urinary and bowel QOL declined at 1 month post-treatment, returned to baseline by 2 years and remained stable thereafter. EPIC sexual QOL declined by 23% at 6-12 months and remained stable afterwards. Of patients potent at baseline evaluation, 67% remained potent at last follow-up.

CONCLUSION: This study suggests that SBRT, when administered to doses of 35-36.25 Gy, is efficacious and safe. With long-term follow-up in our large patient cohort, we continue to find low rates of late toxicity and excellent rates of biochemical control.

Written by: 
Katz AJ, Kang J.   Are you the author? 
Flushing Radiation Oncology Services, Flushing, NY, USA; Department of Medicine, NYU Langone Medical Center, New York, NY, USA.

 

Reference: Front Oncol. 2014 Oct 28;4:301. 
doi: 10.3389/fonc.2014.00301

PubMed Abstract
PMID: 25389521

UroToday.com Prostate Cancer Section

Tc3 from an 11/12 biopsy, MRI, bone scan, 12/12 bad cores, PSA=11.1, G=7(4+3), 2 projections,1 vesicle contaminated. DaVinci RP 12/12, ADT 1/13 - present, ~80 Grey of external beam Cyberknife radation over 40 sessions 6/1/12 - 8/1/12. Age 64.

"Graduate" advanced degree black belt (North American Taekwondo Association), 7 mile a day 7 days a week runner, weight training, yoga, pro chef grade dietician/cook...general health nut. Buddhist, married.

The radiation side effects are supposed to max out by 3 years after treatment termination, then they go away somewhat over a period of decades. Yes, getting the chemo hurts, the pump is a bore, loosing 4 cm of **** was initially uncomfortable, better now.

The most noticible radiation side effects were/are a burning sensation on urination, somewhat explosive bowel movements, and slightly more painful  hemorhoids. There are also 'radiation shits' pretty much as my radiation oncologist warned me of, with cramping & straining for tiny results. Lots of mucous discharge.

It took me a few days to recover enough in hospital to be ready to go. It took the hospital a couple more to get me out. I walked laps around the cancer ward floor (as directed) with a catheter and a pole with my IV hookup. I quit counting after I got past 100 laps/day. I then went home to my couch and my bottle of Captain Morgan rum for 1 week until they took out the catheter. The next morning I walked 6 miles. Within 2 weeks I was slowly running 6 miles a day. For the last 2 months I have been back up to my normal 7 miles a day, though I am slower due to the Eligard.

No, gaining belly fat, loosing muscle mass, sudden washes of nausea, hot flashes, mood swings and all of the other bothersome side effect of the chemo are not much fun, but they will go away as the stuff starts to clear my system in 3 - 5 months.

I hope to regain my sexual desire and function despite having had a portion of my nerves removed due to perinueral invasion of those. I believe that I have improved my chances of living a much longer life due to my choices. This based on my personal circumstances.

Surgery hurt.

EBRT gives some uncomfortable side effects that may take years to show up.

ADT for 2 + years is a stone cold drag.....

...but allowing the PCa to metasticize when there is a very good chance it will do that would mean giving up my life as I know it, to me. In short, my attachment to life is greater than my attachment to penis length, ED or fear of pain.