New Member to the forum.....

Hello one and all.......

 

I am a new member of this forum. I have been reading posts on and off for the past week and a half since being told that I diagnosed with Prostate Cancer on October 18th. As I am sure you all know this was a total shock to my system. The past week and a half has been a roller coasterride.

 

The particulars:

- I am a 56 year old, healthy, active man living in Florida. I am divorced for the past 9 years and have two wonderful sons.

- My biopsy report indicates I have two malignancies. The first, on the left, has a Gleason of 3+3. The other, on the right, has a Gleason of 3+4.

- My most recent PSA taken in July was 2.1, and has never been higher than 4.0 in the past.

 

about 2.5 years ago I went to my primary physician complaining of symptoms of an enlarged prostate. I was getting up as many as 4 times  a night to urinate and it was destroying any chance I had of a normal night's sleep. Plus, I was having ED problems as well. It was at that time the doctor told me get a biopsy done. I had my frist biopsy in April of 2004. While the biopsy showed no malignancy there was a passaage written into the pathology report that indiacted some "suspicious" areas. Actually, I was kind of pissed the report was inconclusive. I wanted to know one way or the other if there was a problem. In any case, it was recommended I go back for a repeat biopsy in 3 months. A repeat of that procedure agian???? Hell, I had a low PSA, the report found nothing... no way was I going back for another test again. "Maybe next year" was my theme. It wasn't that the biopsy itself was that bad (it was for me), it was the after-effects that really gave me the creeps (blood in the semen). I found every excuse in the world to avoid it if I could.

 

Fast forward to today. I had the honor and pleasure of speaking to another prostate cancer survivor who had a robotic laporascopic procedure done in late September, with great results. he was the one who told me about this forum and I can't thank him enough for it.

 

The worst part of this whole ordeal is my beating myself up for waiting 2.5 years again for the next biopsy. In retrospect, I feel like an idiot, but I am getting over it quickly. The last 12 days have been a steep learning curve. The first week I was reacting in total fear of the disease. Since then, I have been responding to the data given me by prostate cancer survivors, doctors, friends, and family. One resource that has been VERY helpful is this forum. I just wanted to say thanks to each and every one of your who posts their experience onto this board.

 

The way things stand now, I am going to remove the prostate. Every doctor I've spoken to says that as a 56 year-old man I should get the prostatectomy. I believe I am going to elect to have the procedure done laporascopically. I promise to let everyone know how it goes. It's decision making time and the surgeons who perform this procedure have a lineup of people waiting in line to get it done. I don't want to be out there much more than 2 - 3 months before undergoing treatment.

 

Anyway, I want to introduce myself to you all and look forward to any responses you may have.

 

Jay

Hi Jay, Welcome to the club no body wants to ever join. I know all about the "roller coaster" ride of emotions. I found out August 17 2006 talk about a big hammer. You sound very similar to my situation. I'm 57 in excellent physical health but I never had any symtoms of any kind. I was just going to change my life insurance and the blood test showed a PSA of 4.3. I thought PSA was a defuct airlines from southern California.  I think you are right on with the lapro or davinci. I had the davinci 10/12/06. It is now 18 days since my surgery I am sitting here with no whitey tighties or pads just my boxers and jeans and boy do they feel wonderful. No drips leaks runs etc. since two days ago Praise God. Everything is starting to feel pretty normal and I mean everything is getting back to normal. They have done some wondedrful things for this type of surgery in the last few years. Anyway, you keep researching and studying this subject you will become a psuedo expert before your surgery. If you aren't afraid of looking at a little blood here is a web site I found facinating it is the actual davinci surgery on video from Univ. Calif. Davis. They gave me a dvd of my surgery after it was done looked pretty much like this video. Anyway, if you aren't sceamish you might find it interesting. Stay in touch on this site there is not more caring group of people anywhere. http://www.ucihs.uci.edu/urology/prostate/prostate_videos/videos.htm

Hey Jay,

Welcome to the group, I am 55 and had lap. surgery on 9/7/2006. Had cath out in 6 days and never had incontinence at all. Only a drip now and then when I feel a BM coming on or sneeze really hard. Doctor said the amount of walking I do daily and stair climbing help strengthen those muscles.

I was unlucky to have rather advanced PCa and am meeting with a radiation dr. tomorrow, my PSA post op is still in .2 range after 5 weeks. Cancer had perforated prostate sheath and gotten into seminal vessicles and bladder neck. Original PSA was over 14 and Gleason 8.

Bottom line pick the best surgeon you can, one with hundreds or thousands of success stories and get second opinions....... but don't put it off too long. This cancer can be very aggressive and very threatening if ignored. I tell all my friends get tested and re-tested early. I like others said I would go anywhere to find the best but found what I consider one of the best right here in St. Louis.

I too had only symptoms of an enlarged prostate. I was prescribed Cipro and Flomax for 3 months thinking it was an infection but when a biopsy was finally done I had 8 of 8 positive cores and a very high Gleason score. A biopsy is no fun as you know but the results are the way you know for sure the state of your prostate.

The people here are the best and will be able to answer almost any questions or concerns you might have. We are here for us, keep us updated.

We will keep you in our prayers and help you however we can.

John

Hi everyone. Thank you so much for your input. If there's one thing I've learned in the past two weeks since the diagnosis is that everyone's situation and perspective is different. The one commonality is that we all have, for one reason or another, been faced with something we really didn't want to deal with in our lives. Like it or not, we've got it and the only thing any sane person can do is deal with it straight up. The weird part to me is that I have somehow adapted to the idea that I have a cancer in my body. I've accepted the reality of it. I thought I'd freak out and die the moment I'd ever get such news. And here I am talking about it in the open, concerned and ready to respond, rather than shriveling up in fear.

While I am concerned about removing the cancer foremost in my mind I am concerned about the long-term consequences of incontinence and ED. I am still single. This can be devastating for someone in my position. I was having problems with ED before this, but was able to take meds to correct the problem. I date and don't know how this will effect me mentally. I have scheduled an appointment with a counselor specializing in emotional and sex related issues. I am deathly afraid of becoming non-functioning for the remainder of my life. I could accept this a whole lot easier if I was a man of 70+. but at 56, this is disturbing me greatly.

I have now met with two surgeons who perform the robotic laporascopic prostatectomy. One has almost 200 procedures under his belt with very positive results both in getting the cancer, recovery and other issues. The surgeon I met yesterday has only 85 procedures and was very cautious and guarded about my my long-term issues with incontience and ED. While I appreciate and respect his candor, it was a setback for me. I want to remain cautiously optimistic. But once the prostate is gone, there is no turning back. The first surgeon told me that he, as part of his aftercare, asks his patients to take viagra once every two or three days post-op because he finds the increased blood flow to the area helps with long-term ED problems. He also recommends using a penile pump to help with blood flow externally. This sounded weird at first, but conceptually it makes sense.

In any case, the time is rapidly aproaching to make a decision. Even though they all say there is no rush, I know the cancer is inside my body and want to do something about it sooner than later. I am hearing that typical waiting time for the robotic surgery can be as long as 2-3 months. So, I feel the need to make a decision now.

Any thoughts woould be appreciated.

Thanks again to you all...... In friendship, Jay

Jay,

The way I approached my PCa was to go ahead and get on a surgeon's schedule and then to do a lot of research. As you said most of the experienced Da Vinci surgeons have backlogs of 2 to 3 months and sometimes more. My surgeon suggested that I go ahead and get scheduled and if after doing more research I decided on another type of treatment I could just cancel the surgery. I believe that help me emotionally knowing that I had at least made a decision to do something but knowing that I was not locked into it. I can not share with you yet the results of my Da Vinci since I am having surgery tomorrow and doing the bowel prep today. I certainly have the same fears as you have but priority is getting the cancer out and knowing that it is out is number one on my list and no other treatment gives that outcome but surgery.

I know what you are going through. Probably the worst of it all is that once friends and acquintances know you have cancer you can tell their change in feelings for you. Good luck and let us know what you need to help you.

Tamu

Follow up..... the Surgeon I was most impressed with is scheduled out to February already!! Ouch!!! Time to take a deep breadth. Since this is not an emergency, I am trying to stay relaxed. Waiting 3 months is not going to be a cake walk..... Jay

Mickey,
Thanks for the input.... It is always the fear of the unknown that is the worst part of this all. The biggest battle going on is the one in my head. My surgeon can't book me until Feb 6th!! I was flabergasted when I heard that! The silver lining is that they must feel that my cancer is not all that life-threatening to allow me to go that long without the surgery. But there are secondary issues regarding health insurance (my deductible is paid up THIS calendar year). Anyway, I am hoping that the robatic procedure will be nerve sparing enough that I will not suffer from permanent ED and incontinence.

One thing is that everyone has been wonderful in giving me advice about the disease. It is amazing how many men are getting this cancer! EVERYTONE knows someone personally who has gone through this. We are far from alone..... keep in touch.

Jay

SJC, thanks for the encouragement...... I need it right about now. I had a good two weeks while investigating and interviewing surgeons and patients alike. It was a challenge and I was up and ready for it. Like I've posted before, this is virgin territory for me. I've never been under the knife in my life. In fact, I've never broken a bone in my body. Last time i had stitches was when I was 8 years old and that was about ^&*)& years ago. This forum has been a life-saver for me. Regards, Jay

well, welcome Brandon :)

hopefully you can educate yourself, and some of your classmates on the importance of early detection, so when you and your friends are getting a bit older, you will be well-informed of the risks of prostate cancer and the importance of exams :)

good luck with your report!