Educated conusmer

lookieloo · August 2005

My name is Joel and I am 60 years old. My story is similar to yours other than it is mine. I was diagnosed April 2004 and I am considered to be in a good position. Only 2 of the 12 biopsy pricks were positive and it was confined to the right side of the gland. With DRE,you do feel a little bump on that right side. My PSA from 9-2003 to 04 2005 hasd gone from 4.5 to 5.1 and neve exceeded 5.4. There were 7 PSA tests. My Gleason is 3+3= 6 The gland is medium in size. I was shocked at first and spent a number of months researching until I needed a break. I am back on the Watchful and Waiting scene with a desire to treat the cancer, but I can't make any decisions. RP is a radical procedure and you all know of the negatives, including the numerous replies I have read in this room about the catheter and imopotence. Impotence, in any treatment is unavoidable 100%. That I know. I know with this surgery it is out and we can take it to Path to see if it spread, but the thought of impotence, potential dry orgasms with no ejaculate, bother the hell out of me. (Can you describe your feelings on impiotnece and your after treatment life?) I recently heard of the Divinci procedure which certainly has a lot of positive things other than it does not have a long history, only since 1999. Has anyone here had that treatment and what do they think? Seeds is my other options and as Ron, I am considered a good candidate. There is a 15 year study which is good and I have discussed seeds with iodine and palladium. Recently, I also heard of extra strenght seeds that are put in, taken out, and put in three times. The result is not to leave those seeds in. There are of course good and negatives to this. The biggest being that the gland stays in your body. The PSA can go up and down and you will not always know whether you are ok, even though you may be told that fact. WOW. Please give me some stories of why you chose either one. Pleae let it be a mix of both. I want to made an educated conusmer and make a decision I will be comfortable with. I know my decision has to right for me and there are no cut and dry answers. I am in the Los Angeles area. Can you share with me your best doctors and place of treatment. I am limited because of my HMO. So in all, I would appreciate the help. And by the way, good luck to all. I am lucky to have found that "Reluctant Chat Line" By the way if there any girlfriends or wives that tell me what they feel about this please do.

Joel W

rogermoore · August 2005

Hi Joel,

You may have already been following my comments and checked my web page. I underwent a RP in March of 2001 at the age of 58. I did have my surgery at Vanderbilt clinic in Nashville.

My conditions (gleason) were almost identical to yours at this time. I emphatically told the Surgeon that "nerve-sparing" was EXTREMELY important to me and my wife.

In brief, I have been extremely satisfied with the results of my surgery. I know, I am one of the lucky ones. But, within a year,(really much less) our sexual activity had returned to normal.
Yes, the orgasms are dry (sometimes with urine leakage), but the sensation is identical to pre-surgery. I must say I performed the kegels religiously, and followed the Dr.'s orders to the letter. I had almost complete continence within 2 months following surgery. I can without hesitancy say that I now lead a completely normal pre surgery life.

Again, as you acknwledged, no two treatments are the same. I will say that a close friend had robotic RP and he is having some continence issues. I don't know about his sexual recovery.

There are success stories of each of the different treatments. I STRONGLY urge you to get a second opinion,and before making your decision be absolutely comfortable with your decision. If you elect surgery, I would not let my HMO limit my options of surgeons. This is your body and you should do your best to treat it the best you know how, even if it is a little more expensive.

We have two chat rooms on the home page of this site. It is open to anyone, survivor or care-giver and there are two new-comers that just this past week underwent RP's. I might be good to talk with them.

Best of luck on you decision, I wouldn't wait much longer, since you PSA appears to be on the rise. e-mail me if you would like to discuss anything in private.

Roger

Mark58 · August 2005

I was diagnosed in January of 2004. I also wrestled with the decision of which treatment to go with. I had the robotic nerve-sparing surgery also at Vanderbilt. This was in March of 2004. I was also 58 years old. My pre-surgery PSA was 5.4 and my gleason was 3+3=6. The after-surgery pathology was different though with a gleason of 4+3=7. In less than a year my PSA started to rise again reaching 1.03. I am now in the middle of 39 IMRT treatments and am hopeful of being cancer free when I am finished. I had no problems with incontenance, but I was not able to have erections after my surgery. I am currently adjusting to an implant which works and is better than other treatments I tried. I hope my response doesn't appear too negative. I don't regret the choice I made for my primary treatment. Like you said impotence is likely to occur with any of the treatments I have read about, and no treatment comes with a 100% guarantee of being cancer free. We are all different and our bodies will react differently to the various treatments. I may not be cancer free after these radiation treatments, but I will deal with that the same way I have dealt with all of this. Research as much as possible, and make a choice I can live with. I would be willing to answer any questions you have. I wish you the best of luck in making your choice. Keep in touch with us. We are all members of the "The Reluctant Brotherhood".

lookieloo · August 2005

Roger: Thanks for your reply. No, I have not seen your website, what is your email? I am glad that your event turned out to be a positive one. You mentioned that your sex life took a year to become normal. That is a long time. Is that a normal time period to get back to normal after this kind of surgery? You also mentioned it took 2 months for your continence to get back to normal. I have read a number of responses in this message area and it does seem that it does take a long time to get back to normal if there are no complications. I understamnd that the seeds are somewhat different. Are you familiar with the seeds and did you research them before your surgery.? Why did you make the decision to choose this treatment. I would like ot hear back from you.

Joel

AuthorUnknown · August 2005

lookieloo said:
Roger: Thanks for your reply. No, I have not seen your website, what is your email? I am glad that your event turned out to be a positive one. You mentioned that your sex life took a year to become normal. That is a long time. Is that a normal time period to get back to normal after this kind of surgery? You also mentioned it took 2 months for your continence to get back to normal. I have read a number of responses in this message area and it does seem that it does take a long time to get back to normal if there are no complications. I understamnd that the seeds are somewhat different. Are you familiar with the seeds and did you research them before your surgery.? Why did you make the decision to choose this treatment. I would like ot hear back from you.

Joel

I had surgery Feb of this year.I was pad free about 2 months after the tube came out, which was in for 3 weeks. When I first heard about the time involved in returning to normal, I also thought what a long time a year is going to be. But it's been 6 months and with the progress I'm seeing , yes there is progress, another six months will be a blessing to get to " normal". I do have ED issues, but I seem to be following the time line my Dr. explained, so I am on track and recovering. Get all the info you can mentally digest and don't panic. I know someone on the outside might say it easy for me to say don't panic, but like almost everyone that posts here, I've been there, in fact I'm still there. I'm trying to get my brother to post his experience; PSA 121, nodes infected, beam treatment with hormones. We were both going throught this at the same time. Anytime either of us had a positive moment was a time for rejoicing for us. As you know, " Ypu're not Alone".

KMiyoko · August 2005

Hi Joel,

Sorry about the cancer. My husband had prostate cancer too. We opted for the Da Vinci Laproscopic Robotic Prostatectomy. His PSA was 6.55, Gleason 3+3(6) the Dr. felt nothing on the digital exam. The reason we chose that procedure was numerous. The first was to get rid of the cancer. The other reasons are numerous, nerve sparing, less invasive, less blood lost, 3 dimensional viewing for the doctor, panoramic color, maginfication x12-16, less problems with Dr.'s hand tremors, the eye-hand coordination for the robotic is normal in the sense when the Dr. moves to the right the instruments move to the right...not the opposite as with regular laproscopic, hospital stay is 1 1/2-2 days on the average, catheter stays in for 5-7 days, pain & recovery is faster. He had his surgery on Monday afternoon and was out of the hospital on Wed. afternoon. He has only taken motrin for a headache since being at home. We went to the City of Hope, with Dr. Timothy Wilson. It does NOT take some HMO's (Kaiser does NOT PAY out for this) It cost about 30-50 thousand dollars. There is a Dr. in Irvine will do it cheaper.... if you want info let me know. He charges $6,000.00(?) for his services and I don't know what the hospital cost.

lookieloo · August 2005

KMiyoko said:
Hi Joel,

Sorry about the cancer. My husband had prostate cancer too. We opted for the Da Vinci Laproscopic Robotic Prostatectomy. His PSA was 6.55, Gleason 3+3(6) the Dr. felt nothing on the digital exam. The reason we chose that procedure was numerous. The first was to get rid of the cancer. The other reasons are numerous, nerve sparing, less invasive, less blood lost, 3 dimensional viewing for the doctor, panoramic color, maginfication x12-16, less problems with Dr.'s hand tremors, the eye-hand coordination for the robotic is normal in the sense when the Dr. moves to the right the instruments move to the right...not the opposite as with regular laproscopic, hospital stay is 1 1/2-2 days on the average, catheter stays in for 5-7 days, pain & recovery is faster. He had his surgery on Monday afternoon and was out of the hospital on Wed. afternoon. He has only taken motrin for a headache since being at home. We went to the City of Hope, with Dr. Timothy Wilson. It does NOT take some HMO's (Kaiser does NOT PAY out for this) It cost about 30-50 thousand dollars. There is a Dr. in Irvine will do it cheaper.... if you want info let me know. He charges $6,000.00(?) for his services and I don't know what the hospital cost.

This is to kmiyoko. Thank you for your reply. I am in the Los Angeles area and I am currently reasrching the Divinci treatment at Cedar Sinai. I would like to make contact with you and your husband and talk more in depth about this procedure. It does sound good although it hasn't been in use a real long time. I would like to hear what comments the doctor may have made to you regarding future problems for this type of surgery etc etc. I have read a few chats from other'sm who have had this done and they a few were real good and one not so good. I know this is an individual event and all people are different. Please give me a contact number or emnail or something that I can contact you. Please include a good time to talk.

Joel W.

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