I am taking Lee's advice and starting a thread with my posts.
I did a lot of research after my husband, age 51, was diagnosed on Dec 5, 06 (Gleason 3+3, T1C, PSA 4.3). His diagnosis was purely PSA driven, and his biopsy showed less than 10% of cells, 4 out of 12 core samples, one side of the prostate only. It became obvious that the robot assisted laparoscopic, nerve sparing proceedure was our treatment of choice and I called the Henry Ford Center for a recommendation on a California surgeon. My extensive research had led me to believe that the "Veil of Aphrodite" was only a trademark for nerve sparing surgery by Dr. Menon, and I took the percentages of regained potency quoted by this and various other doctors with a grain of salt. There hasn't been enough time since robot assist, laparoscopic, nerve sparing surgery has been used to gather definitive statistics, in my opinion. I don't know where you reside, but I can tell you that we went to Dr. Ahlering at UC Irvine, where the Da Vinci machines were developed. By the way, Henry Ford could not recommend a surgeon, but the person there did reiterate that UCI developed the machines they use. My husband had the surgery on Feb 27, 2007 and had the catheter removed on Mar 6. He had immediate, full continence and (surprisingly) immediate and regular tumescence. Still too sore to attempt intercourse, as he also had two hernias that the doctor repaired, he has already had an erection strong enough for it. He appears to be in the 30%-50% of men who gain immediate function. Dr. Ahlering prescribes Viagra (1/4 pill 25mg) per night starting the night after surgery. He also recommends that one continues to take it even if erections are achieved. Both my husband and I feel that doing everything one can do is important. On that note, we ate a 60% vegan diet (still had fish and eggs sometimes), went to a support group and tried something that no one has mentioned yet in any venue: Reiki. This kind of healing seemed to energize the whole pelvic area as well as create a regular meditation that was most positive, relaxing and fear-relieving. His last PSA before surgery was down to 3.9. One last note, the pathology showed cancer in both lobes, with Gleason still at 3+3, negative margins. We are glad we didn't wait, although we had considered it. Removal while still contained and while the prostate is not too enlarged is optimum. One last thing, diagnosis in younger men is on the rise, thanks to PSA. I looked specifically for cases and personal postings that my husband could relate to at his age. I hope this helps. Best wishes to you!
P.S. Swimom has a lot of knowledge (thank you!), and clarified the meaning of “Veil of Aphrodite”, in a good post. I am including here a definition from an abstract from Recent neuroanatomical studies on the neurovascular bundle of the prostate and cavernosal nerves: clinical reflections on radical prostatectomy by Selcuk Yucel, Tibet Erdogru, Mehmet Baykara, Department of Urology, Akdeniz University School of Medicine, Kampus 07070, Antalya, Turkey
“…recent neuroanatomical finding that showed that the cavernous nerve is not contained in the neurovascular bundle. In fact, it is located in the fascia, so deep that some non-nerve-sparing surgeries may result with inadvertent nerve-sparing surgery . On the other hand, a very delicate nerve-sparing procedure could end with ED, because the proxi mal or distal ends could be damaged. Bhandar et al.  proposed a different approach for robotic/laparoscopic radical prostatectomy that did not involve opening the periprostatic fascia, thus leaving all small cavernosal nerves intact within the fascia. They called the neurovascular bundle and cavernosal nerves the "veil of Aphrodite" and developed a technical modification to the nerve sparing procedure that spared the main neurovascular trunk, but dissected a wide band of periprostatic fascia extending from the reflection from the pelvic fascia proximally, puboprostatic ligaments distally, Denonvilliers＊ fascia posteriorly and free edge anteriorly.
New to this area, but read quite a few posts while deciding what to do. A couple of factors helped us make the decision between surgery and radiation. Radiation all but rules out surgery later. If you have surgery, you can always opt for radiation later, if cancer re-occurs. We spoke to two imminent urological oncologists. Only one in 27 years did a prostatectomy after radiation. He said it was like trying to remove concrete. The other, whom we ended up having perform a robotic assisted laparoscopic proceedure, said that age should be a consideration. His opinion is that with 10 years of statistical proof of survival from radiation, it is easier to live with radiation as a choice if you are only looking at 10 to 15 more years of average lifespan. For someone in their 40's or 50's, 10 to 15 more years is not acceptable, and the chances of retaining function are greater in younger men. Furthermore, five year studies are now showing that function originally retained with radiation can erode with time. So, I would say that age and current function would be very important factors to consider in making the choice between radiation and surgery.
Not too long ago B and I were in the same boat. B had been taking herbs ever since his PSA started rising. It rose over 4 years, but the spike from 3.2 to 4.3 in one year caused the primary care physician to recommend a biopsy. Boy, that was not something we wanted to do! But, as he told us, PCa in a man of 51 years old can be fatal. So, we did a few things prior to biopsy. First, we went on a trip to Europe! Then we started some alternative therapy in the form of Reiki. Several sessions a week created a sense of calm, re-vitalization and helped both of us prepare for the procedure. Besides that, it can cure you, and we wanted to give it a chance. Once the biopsy was taken, with positive for cancer in 5-10% of 4 out of 12 samples in one lobe, we got serious about lowering PSA while we researched our options. We turned to a vegan diet. Check out the study done at SF State University and (I think) Sloan Kettering (or Johns Hopkins). They took 95 men who would not do regular treatment for PCa and put half of them on a vegan diet (no dairy, meat or fish), whole grains, fruits and vegetables, had them do moderate exercise, meet in support groups and do meditation. After one year, the protocol stopped or reversed evidence of cancer in the half to the extent that they followed the regimen. Of the other half, the control group, some had to go to conventional therapies due to the spread of the disease, and none had a reversal. Studies are now definitive in showing a link between PCa and high dairy fat and/or red meat intake. Nevertheless, if the mind/body connection, coupled with genetics and environmental factors caused this present situation, did B have the muster to try and radically change the progress of the disease without the aid of modern medical science with complete faith in the desired outcome? Even though his PSA lowered to 3.9 before surgery, as one kind person said in one of these rooms, "It doesnt matter what your PSA is if you have cancer!" In the end, we decided to make healthy changes and use the "insurance" of modern medicine. He had a robot assisted, laparascopic prostatectomy on Feb 27 at a "teaching hospital" and has had an optimal outcome. The biopsy did not show all the cancer; after all, biopsies are somewhat like finding needles in a haystack. But his Gleason stayed at 3+3 and we are happy we got it out. All in all, we took about six months from PSA to surgery, with lots of research and careful consideration. Best of luck to you,
Accepting the urologist's recommendation for a biopsy was difficult. There was a lot of worry about pain, especially after the biopsy. We put it off for a month, because we had the trip of a lifetime planned, and didn't want to know until after. But, the whole idea of it was very difficult. B suffers from anxiety in general, and due to this asked his primary care physician about the possibility of receiving some anti-anxiety medication right before the procedure. He directed him to the urologist, saying it was a reasonable request. The urologist's office said that the doctor would administer an IV valium, but that B would have to have someone drive him to the appointment. No problem, I drove him there. After waiting a long time in the waiting room, he was ushered into a cubicle. Nothing was administered, and he waited for 20 minutes looking at what he deemed "instruments of torture", long needles and a "***" shaped instrument, while I waited in the waiting room. He said it was all he could do to keep from walking out of there! When the urologist came in, B asked when he would receive the anti-anxiety meds, and the doctor replied, "You don't need it" B said, "But I specifically asked to have it" Doctor said, "If you insist, but you don't need it. I have already done two of these today and they didn't need it." Angry, B shut down and went through the procedure which, he reported, was uncomfortable but not terribly painful. The worst part was the anxiety leading up to it. Needless to say, B was very angry at the doctor. The incident further exemplified the lack of communication between staff and doctor in this urology group. One week later, after waiting 45 minutes in another cubicle, the doctor came in without even having previously read the report, sit there for 3 minutes and then pronounced, "Well, you have a little cancer" We stumbled out to the desk to make another appointment for a consult after the prescribed blood work, and the young woman couldn't even get B's name right. That did it, we found another urologist after he had the blood work. Our lesson from this was: be pro-active, speak up, find support, find comfort, don't settle for second rate.
My husband was devastated when he got diagnosed in December '06. He just seemed to fall into a dark hole, while I was galvanized into action, researching, researching, researching. He couldn't even talk to his family, and I just played pass-interference for him for that week. All my research underscored the importance of joining a support group. On what seemed like the darkest day, I looked up a local group, called the number and got the phone number of a prostate cancer survivor. At the risk of meddling too far, I called husband at work and said, "All my research states that it is essential to get into a support group. Will you call Mr. XXXX? Here is his number." At first he cringed (he told me later) and then took the phone number. He called me later that day and said that he felt so much better after calling Mr. XXXX. After that, the clouds parted and he started getting interested in my "hmmmm's" while finding out all I could. He said that, although it was difficult to swallow, he decided that he should follow all of the recommendations to insure a most positive outcome. Prostate cancer is a "couple's disease". I am glad you are going to the next appointment and I hope you find the courage to ask about depression...it goes with the territory, it seems.
March 11, 2007
I am so happy that our experience is of help to you. I too wanted B to avoid the discomfort of an "inadequate" biopsy, and read studies on PET scans, ready to spend the money to get a complete "picture" of the prostate. The problem is, there is no reliable isotope for the prostate cancer marker, and even though there is one kind, it cannot distinguish the kind of cancer, when evident. And grading is so important to diagnosis and treatment.
My opinion, after our experience, is that the advances in prostate cancer treatment have left some local and small town urologists in the dust. Despite a generally forgiving attitude, we had to leave our local urologist after experiencing poor, and probably inadvertently uncaring, handling. With PCa, nothing is black and white, and any urologist that is not ready to get into a lengthy discussion is not, in my opinion, worthy of walking down this path with you. If you end up with the diagnosis, and I HOPE NOT!, in my opinion, full caring support is essential to your recovery, from the appointment scheduler on down the line. One of the reasons this website was so helpful was for the support. I learned a lot here while gathering my facts.