Very confused

I would recommend you read Dr. Patrick Walsh's guide to Surviving Prostate Cancer. This is an excellent book outlining different alternatives to combating prostate cancer. Do not make an immediate decision until you are fully informed of the benefits and consequences of the different techniques.

?I chose proton radiation and now after 3 years I am very happy with the results. I have no negative effect. Do not accept the argument that surgery is the only and best alternative. Also do not accept the advise that surgery removes the prostate and your problems are over. We had several individuals in our group at the prostate cancer clinic that had the prostate removed and some tissue remained and continued to grow. They not only had to incur the negative effects of surgery but then had to continue with radiation. There is no easy answer for everyone but with good advise and knowledge you will feel comfortable with your decisions. 

 

Hi, sorry, I'm not sure you received my last message, I typed this long lengthy response and then my phone went haywire.  Basically I would highly recommend you see Dr. Laudone at Memorial Sloan Kettering in NYC if at all possible.  I'm 52 years old and had the robotic prostatectomy not even three months ago.  Full erections any time needed, even within two weeks post surgery, not one leak, no incontinence whatsoever.  Couldn't ask for a better biopsy report.  Everything was contained to the prostate, PSA level 0.05

Best of luck to you

You are at the crossroads. A decision needs to be made soon but not today. Keep researching. Follow up with your urologist about the statement the Radiation oncologist made about you' ll see him in the future.

For myself : 66 yrs old. Gleason 7 -4/3. Prolaris intermediate aggressive.

Had robotic assisted prostatectomy, March 2017.

Surgery was without any complications actually it was easy for me.

Side effects. Still have minimal urinary incontinence which is a bother rather than a quality of life issue. Have no sexual activity but have not followed up with treatment via Cialis or other medications.

The reason I went with surgery was the thinking to just get rid of the cancer.

3 months later I have PSA. .15. 6 month later. .19.

I then had a PET SCAN WITH AXUMIN which came out negative meaning there appears to be no clumping of cancerous cells in the body. I am now on the wait and watch routine, 3 month follow up PSA tests.

If there is a build up, external beam radiation therapy is likely.

Not making me happy.

I steered away from the Radiation therapy mainly because at the end of my consultation it was casually mentioned hormone therapy would be included. In my research hormonal therapy had a lot of long and short term side effects.

Keep researching talk to people, you will be suprised how many are also been thru this.

I am sorry to hear about your situation. You have come to a good support group though. There are many men who have had your same situation and you can learn from them as to what works, what doesn't work, and their experiences. There are many treatment options depending on your situation. I was diagnosed nearly two years ago with prostate cancer. My situation was that it was caught early and I had a non aggressive type. My Gleason score was 6.5, and my PSA was at 5.6. My urologist directed me to a website that showed treatment options available and where you can plug in your own numbers and see what is recommended. I met with an oncologist in San Antonio, Texas who was extremely knowledgeable about my options. He took the time to go over each one with me and explain the side effects and success rates. I was lucky to have him work with my urologist on my treatment. I was able to do Brachytherapy  (low dose radiation seed implants) done as an outpatient procedure. I plus for this is that it is a one time treatment that takes about 45 minutes. Side effects are minimal, but with any treatment there will probably be side effects. They are tolerable. Here is a website that I used to help with my decision on treatment. http://www.pctrf.org/

Good luck to you - I wish you the best.

Hi Mark,

My personal story and advice to you here is in many ways similar to that given in a prior reply from Hopeful65.  I've posted the same in response to a similar discussion started by another recently diagnosed on this forum, as well as in another fairly active PC website forum.  With that said, here it is again as follows:

I had not too long before just turned 60 years of age, and setting aside the continuous battle against the bulge, had (still do) managed to stay in pretty good shape, and was in pretty good shape in all pertinent health and functional ways at the time that I was officially diagnosed with PC (G=7) on 12/02/16. From what jsf57 has shared, it sounds like, my experience at MSKCC was in many ways similar to his. The surgeon who performed my RALRP (03/31/17) is one of the what I have come to refer to as the "Top 3" at MSKCC (Doctors Laudone, Eastham, and Coleman). This is not to take away from any of the many other excellent surgeons at MSKCC, but these are the 3 that I'm aware of who've performed far in excess of 2,000 RALRPs over the last 10 or more years. Another aspect that was highly important in my final decision was that it is my understanding that each of these surgeons at MSKCC performs what I consider to be the optimal skill level balance of surgeries per day, per week (1 morning and 1 afternoon, 2-days per week). Whereas, some other providers around the USA (some fairly well known) that I know of perform at other from 4 to 5 per day, on 4-5 days per week, which frankly tended to scare me, and cause me to question whether such surgeons would be personally/solely the one performing truly 100% of the robotic procedures. My surgeon was Dr. Coleman, and he told me plainly that his weekly surgery schedule is consistently 2 per day on Thursday and Friday only, and that he and only he would be at the DiVinci controls performing my RALRP. The surgeon who performed the RALRP on the gentleman recovering in the private room beside mine (also G=7) at Josie Robertson Surgery Center was one of the other Top 3. From keeping in touch now and again since then, I would say that his results in terms of healing, continence, and potency have been similar to mine.

I'm overwhelmingly thankful and grateful for the path that I firmly believe I was divinely led through that ultimately took me all the way from the heart of Texas to MSKCC in NYC, especially the outcome that I have been amazingly blessed to have experienced. This so much so that when I read stories from others on this board and others, the many that bring tears as well as a few now and again that speak of reasonably good to very good outcomes, I become inspired to tell as many men as I can who are currently journeying through this PC travail and those to follow about my life changing journey and amazingly better than hoped for outcome, so that hopefully they too can realize the same.

The details of my journey through the often turbulent, daunting, troubled waters of PC, and outcome to date have been as follows:

1. Perhaps life saving, and part of the divine guidance was having a 2nd biopsy taken by Dr. Ehdaie at MSKCC in early February about 3.5 months after initial diagnoses biopsy and MRI analysis done locally in Texas. My oh my, what a difference in analysis and results. Local results where 3-cores positive all in left rear base to mid area with G=(3+4), (3+4), (4+3), no PI, and no ECE found in MRI. MSKCC results including second opinion on the same MRI were very different in major ways with 3-cores positive all in left to mid, G=(4+3) in all three, PI positive in one, and ECE probable (50/50 chance). Yikes, much worse than the initial!

2. Post surgery MSKCC pathology was pretty much in line with the MSKCC pre. ECE was present in lower rear left base (stage raised to pT3a) and PI identified, but no lymph involvement, no vascular invasion, no seminal vesicle involvement, no bladder neck involvment, and all surgical margins negative. Some bad mixed with a fair amount of good.  

3. Soon after surgery in recovery room, Dr. Coleman informed me that nerves were 100% spared on both sides. Further good news.

4. Ultra sensitive PSA taken on 06/05 < 0.02 (9+ weeks post RALRP), and again on 08/16 < 0.02. Hooray! Next PSA check is planned for late November.

5. 100% dry since time catheter removed on day-7 post RALRP. No leaks, not even when sneezing, coughing, lifting, straining, etc. So exceedingly happy about this one!

6. Lost a noticeable amount of upper body muscle (shoulders, chest, arms) very soon after RALRP and persisted through the prescribed 6-week no 10+ pound lifting period, but this can be brought back by restarting some resistance exercise/training as soon as able post 6-weeks. Probably would be the case as with any major surgery. Never expect that just because it's laparoscopic, RALP is not a major surgery. It is. For me, the first week was the worst, 2nd week got a good bit better, and after 4-weeks things really started looking up. I recommend long walk, walk, and more walk (with kegels continued) as much as possible during this no-lifting time period.

7. Started having inklings now and again of slight erection (50 - 60% full) about 2-weeks post RALRP. Woke to full erection on day 27, and things have been working pretty well since then. Takes a bit more time and touch to get things going, but hey that could be a benefit depending on how you look at it. Remain on Sildenafil under Dr. Mulhall's care to help optimize longer term recovery with no relapsing. Plan to ask to try things without it at next follow-up appointment in early December. Low-T is also a factor (had this long prior to PC diagnoses), so taking T-Gel supplement daily for that one, and it makes a big difference.

8. Today (08/31) marks exactly 5-months post RALRP. Recently (within last couple of months) have noticed that climax during sex, although a bit different, is different in a better way, meaningfully more intense, and lasts 1.5 to 2x times longer. I've of late been wondering if perhaps it was the case that the diseased state of the gland was actually acting as detractor and inhibitor in that regard? After all, it is clear now that the little booger was badly messed up, and likely had been getting evermore so over time. Hard to put my finger on it, but I had noticed from time-to-time a sometimes dissappointing level of degradation in this aspect over the years past. Plan to ask doctor about this at next follow-up.

9. Although I can definitely dance to it, sort of sadly I can no longer emulate the jewelry related lyrical content included in the long ago released popular ZZ-Tops tune. However, all things considered, in the grand scheme, a minor concern and trade-off.

Factors that I think positively affected my overall outcome where as follows:

1. First and foremost, the surgeon & surgical team. Truly, the surgeon is #1 in importance, but the surgery team staff from head fellow, anesthesiologist, PA, surgical RNs, down to whomever is in my IMO a close #2, and I think that I was blessed to have the best possible in terms of both.

2. My overall urological, potency, and general physical condition going in.

3. Focused kegel regime while taking 4-5 mile walks 3-4 times per week, as well as often when standing and sitting with feet pointed outward at a 45 degree angle.

4. Prescribed regime of Sildenafil starting 1-month pre-RALRP, and resumed after day-7 catheter removal. Cialis is maybe better if you can stand the much higher cost.

5. Prayer, faith, and best effort at keeping a positive attitude. Constant expressions and deep feelings of gratitude, humility, and humor can be the best spirit friends in these times.

6. Last and far from least, the best life partner one could ever hope for to give care and support both before and during recovery.

Dr. Mulhall at MSKCC is a well known expert on Men's sexual heath. Depending on one's own personal assessment, setting up a consultation pre or post surgery (or both) could be very helpful. I also recommend his book "Saving Your Sex Life A Guide for Men with Prostate Cancer"

As a final valuable tip, those having treatment at MSKCC that do not live within commute distance can request through their assigned social worker to stay free of charge at the American Cancer Society Hope Lodge located on 32nd St. between 7th and 8th Ave. It was absolutely wonderful to stay there through catheter removal, and MSKCC provides free shuttle service to/from the Lodge every 30 to 60 minutes depending day and time. As would be expected, space is limited, so plan on making the request at least 4-weeks in advance to helps ensure fulfillment, and always keep in mind that the ACS and all the great work it does are 100% supported by donations.

There is hope, and IMO MSKCC is probably one of the best, if not the best place to find it. All the best in all of the viable treatment options, and experts in the field for each are available there (be it RP, all the latest RT methods, focal, and AS), and you'll be able to decide on the one that you come to see as best for you.  

I hope that the above serves you most well, and may God bless and guide you through everything,  

n-mac.

Mark. I've just had NanoKnife treatment for prostate cancer Gleason score 7 4/3.

Procedure lasted 40 min.

Was day surgery.

You can get info from

Professor Stricker @St Vincents Sydney Australia.

Hope this helpful

Best wishes Bernie...

Hello, this is my update: I had radical prostatectomy via DaVinci on Nov 28 and surgery went well. Post-surgery biopsy just in: cancer was contained to prostate; did not spread to margins or lymph nodes.  My Gleason was downgraded from 3+5=8 to 4+3= 7.  I am stiff and sore and my scrotum deep purple and a bout the size of cereal bowl. I am overwhelmed by such a positive outcome.. The foley comes out on Dec 5. I know I face the battle of incontinence and erections, but I am so every grateful that the cancer has been chopped out.  The annual PSA screening caught this problem.