recently diagnosed in Boston

Here's the link for a second opinion at Johns Hopkins: http://pathology.jhu.edu/department/services/secondopinion.cfm[url]

All they do is read prostate cancer slides - the pathologist that read your slides looks at all kinds of cancers, so the second opinion via Dr. Epstein is often somewhat different than the original opinion.

I'm not aware of any restrictions on activities before surgery - My doc specifically said that I will do better if I'm in good shape - particularly core strength.

Rob

Hi Tomobrain;

I'm doing fine. I had locally advanced prostate cancer - a very high PSA, and the cancer had extended from the capsule of the prostate, invaded both seminal vesicles, but had not invaded any other tissues in my pelvis. Additionally, the cancer had escaped the prostate into the lymph system - so four of the eight lymph nodes removed during surgery were positive for cancer.

That pathology was bad enough that additional treatments would be prudent. However, I had a positive surgical margin which means that when the pathologist examined the prostate / tumors that cancer cells went all the way to the edge of what the surgeon cut out. Positive margins are not that uncommon - I've read as high as 40% in some studies. This is a complex, difficult surgery, and at some points the surgeon must make truly blind cuts and hope for the best.

With a positive post surgery PSA of 0.13 - additional treatment was required. My surgeon said that most of the time persistent PSA is due to the positive margins, not the micro metastases in the lymph system. So the next step was Lupron - an injected hormone that stops the production of testosterone. PCa cells need testosterone to grow and multiply - generally speaking. No testosterone stops the growth of PCa, and some of the cells will start to die. I'm also getting radiation treatment to the prostate bed - where it used to be, and to the lymph nodes in the pelvis to take out any remaining PCa cells.

Rob

I recommend specifically getting the biopsy slides read at Johns Hopkins. They're considered the best in the business and specialize in PCa slides.

Like Hogo2000 I and my brother had our surgery performed by Dr. Adam Kibel. I highly recommend him. He is now at Dana Farber, and is the division chief.
Surgery was a huge non-event. My recovery was complete in 30 days. After 30 days no one could have guessed that I had surgery. In fact I was having problems following the standard postoperative instructions and restrictions at that point because I was doing so well.
So 9 years out I’m still seeing < on my uPSA result. I have some stress incontinence (very little but it is what it is), I don’t need a pad or anything but I do need to be careful. My day job is at a desk but at home (on the farm) I’m very active and do all kinds of work. I don’t have ED issues but post-surgical sex has never been “normal”, it never will be. In my case it sucks. I’ve kind of lost interest.
Like others I would also encourage you to look at multiple treatment pathways. You owe it to yourself to make a completely informed decision.
Good Luck Hero

Tomobrain:

With surgery it is a total numbers game. Radical prostatectomy is a difficult, long (4 1/2 to 6+ hours) and very involved surgery, where small things can have a big impact on your quality of life.

Find out how many robot assisted RP's your surgeon has done it should be in the high 100's, and preferably 1000+. There is a very steep learning curve with the DaVinci system, and experience is one of the largest factors in getting a good surgical outcome. Also, they should be doing RP's on a very regular basis - like every week to have confidence in their skill with the procedure.

Good luck

Rob

Hi Tomobrain.

I am also near Boston. I had ORP at Mass General and would choose that again over robotic - though there isn't much to choose between them in statistical outcomes.

Agree with all above about second opinion and looking at all options.

If you go with surgery, selecting a surgeon is not only about how many surgeries. I suggest seeking a surgeon who improves with practice. Not all do. Dr. Kibel (recommended above) is likely among the best. You can watch him work at /www.youtube.com/watch?v=11w7mISlA9E

23 hours in Mass General was not a good experience, but the surgical team (Dr. McGovern) was magnificent.

Recovery was pretty quick and easy, but I do have persistent ED.

Best to you -
Wilderness.

Tomo
I have an excellent quality of life. Better than I deserve.
I have two brothers, out of the three of us, two have prostate cancer. We both opted for the surgical pathway. In 2009 I was 51 and I believed that surgery was the best option. And we are both doing very well. We are very active and I would say that our post-surgical status doesn’t limit our physical activity. The surgical technique is constantly being redefined and outcomes are improved. The biggest disappointment that I have are the number of individuals that undergo surgery when in my opinion it would be a no-brainer on the fact that surgery was a very poor choice.
In your specific case surgery in my opinion would be an appropriate option. However I believe that radiation would also be a prudent pathway. So you have a decision to make. Don’t worry about what others would or wouldn’t do. You gather the facts in a reasonable amount of time and move forward.
But you did ask. So given the fact that I’m 60 now I would choose radiotherapy today. I’m impressed with the data and I would have it done at a major center.
Sexual function is a strange thing. Or at least it is with me. I don’t have ED but the sexual experience is very disappointing. It doesn’t feel anything like preoperative sex. I have heard stories of postoperative sexual status “just as good” or “more intense”. But that isn’t my experience and not the experience of others that I have spoken with. My post-surgical sex sucks and I have mostly given up on it.
Good Luck
Hero

I my own case i did surgery first (Gleason 9) then 5 years later did a round of radiation combined with Lupron as my PSA began to rise once again to 0.13

There appears to be a strong connection with the consumption of sugar (in all forms) and its ability to feed cancer cells. I personally moved from the standard American diet to more of the Mediterranean diet and mostly eliminated beef etc except on occasion. Ditto on booze. There is a lot of info out there on diet and I suggest you do some research.

As far as playing - I do exercise (ride a bike 25 miles most days ) and there are many who believe it can be very helpful in combating cancer growth. I am familiar with one patient with metastasized advanced cancer who participates in DragonBoat racing and swears it has helped. In fact his exercise regime was suggested by MD's at Memorial Sloan in NYC. He is still going strong.

Prostate cancer and how it impacts someone is unique to each individual - rather then following expert advice I prefer to listen to all options and make my own decisions. Once you make your decision it best to not look back and question - best to look forward and enjoy life.