New Member to the forum.....

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

JayMan56
Regular Member


Date Joined Oct 2006
Total Posts : 61
   Posted 10/30/2006 10:07 AM (GMT -7)   
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

geobet1
Regular Member


Date Joined Oct 2006
Total Posts : 54
   Posted 10/30/2006 11:14 AM (GMT -7)   
Hi Jay - I just recently joined this site myself last week. Full of very thoughtful, caring and insightful people. So, don't be afraid to ask anything. For example, out of all the stuff facing us, somehow I got hung up on removing the catheter. Posted a question and got immediate positive feedback. Puts it into the proper prespective. Sure has given me a level of comfort that I didn't have before.

I'm just a few years older (59) and also live in Florida. I got my biopsy results on Oct. 17. My Gleason score is the same as yours. PSA a bit higher at 4.5, up from a 2.5 last year. So we're right around the same stage in treatment. Anyway, just had my CT and Bone Scan done this morning. Wasn't bad. Even the stuff you have to drink didn't taste so bad.

Hang in there pal, I know its a scary ride at first, but you've found a site here that can really, really, really help!! And, we're on this ride together!!

George

56pontiac
Regular Member


Date Joined Sep 2006
Total Posts : 230
   Posted 10/30/2006 11:47 AM (GMT -7)   
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

Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 10/30/2006 2:08 PM (GMT -7)   
Hi There Jay,

I am the same age as you but I had no symptons. What led to my biopsy and the finding of Pca was an increase in my PSA from a base of 2.8 to 4.3. I had 1 of 10 core samples that was malignant on just one side. My stage is T1c and Gleason of 3 + 3. I was diagnosed in early July and will be having a Da Vinci this Wednesday. I live in Alabama. This is a great site and everyone on here knows what you are going through. I have found a lot of comfort from the postings. I am also in good health but have picked up my walking since being diagnosed and have lost a few pounds and feel that I am as ready as I can be for the surgery. As you have found out from this forum the most important decision facing you now is the selection of a surgeon. I did not let geography influence my decision as I was prepared to go anywhere in the US to get to the right surgeon. It just worked out that my surgeon of choice is only a couple of hours from my home. The key to this site is that you can find out more here about what you will be going through then any doctor can tell you. It is just common sense that men and wives that have gone through the actual experience are the best source for information. I also found the site www.yananow.net informative. The mentor experiences are catergorized by type of treatment and they give you a look into the lives of men that have dealt with PCa. The good thing about this site is that you get some of the positive experiences while other sites seem to be populated with men that have had significant complications. It is no surprise that men that have come out of the surgery with good results do not contribute as they are happy and not looking for help. I have especially been impressed with the results that have been posted in the last few weeks where our brethern are reporting rapid recovery, return to continence and best of all, return to potency. That is the goal for all of us so welcome abroad and keep us updated on your progress.

Tamu

jeb187chs
Regular Member


Date Joined Aug 2006
Total Posts : 62
   Posted 10/30/2006 7:01 PM (GMT -7)   
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
Diagnosed Aug. 7, 2006
Age 55
Biopsy 8 of 10 positive
Gleason 8
PSA 16.2
Negative CTscan, bone scan and lung x-ray
Lapro Prostatectomy 9/7/2006


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 10/30/2006 7:26 PM (GMT -7)   
Hi Jay,

Welcome to the club. I hope everything works out well for your surgery schedule. We will be here to help you any way we can.

Glen

JayMan56
Regular Member


Date Joined Oct 2006
Total Posts : 61
   Posted 10/31/2006 7:19 AM (GMT -7)   
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

M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 10/31/2006 7:32 AM (GMT -7)   
Jay, my husband had all of the same thoughts you are having now. but the most important thing was getting rid of the cancer. then he worked on the incontinence. now we are working on erections. that has been frustrating but he is taking Cialis and will talk with his doctor about the pump later this month. a friend of mine was in your same situation (age, single) and said that everything worked out fine for him. he has been dating and is now in a serious relationship. I guess what I'm trying to say is that life does go on....may have a few potholes and bumps....but we know that eventually it will all be "normal" again.

kat
Husband Jeff 56 years old
diagnosed July 27, 2006
PSA 6.5
2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1
no more pads Oct 12, 2006


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 10/31/2006 7:51 AM (GMT -7)   
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

JayMan56
Regular Member


Date Joined Oct 2006
Total Posts : 61
   Posted 10/31/2006 8:20 AM (GMT -7)   
Kat & Tamu, thanks for your thoughts. Getting the cancer is always, first and foremost on my mind. This is why I am considering a prostatectomy as my first option. Yes, I am having fear of the unknown, but that will go away as time goes on and new priorities take their proper place in my life. I am watching videos of the robotic procedure and it is most impressive... minimal blood loss and quick recovery times with a better prognosis for nerve sparing. As for scheduling the appointment I like your idea Tamu. Any pre-op things that need to be done won't be required usually until a couple of weeks prior to the procedure.

God Bless you all.... Jay

JayMan56
Regular Member


Date Joined Oct 2006
Total Posts : 61
   Posted 10/31/2006 8:39 AM (GMT -7)   
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

mickeyboy
Regular Member


Date Joined Nov 2006
Total Posts : 56
   Posted 11/4/2006 7:51 AM (GMT -7)   
Hi there, im in same situation as yourself 3rd biopsy in 18 months found something suspicious, diagnosed with gleason 3+3 psa of 3.4 , psa been up and down like a yo yo never been more than 3.8 no symptoms at all, i have been checked every year since i was 40 ( now 48 ) due to my dad having the disease, not something i reckoned having done at my age but like you have surgery scheduled for 8 dec, not looking forward to it but ive got to get it out of me and work on the other bits after, i know a lad of 42 who had the procedure and and was told the other day he is ok now all working perfectly, so my friend there is hope for us yet, keep on being positive and look on this as being another of lifes challenges, we have all got this far and i intend to go a lot further just as im sure you do. Be lucky.

JayMan56
Regular Member


Date Joined Oct 2006
Total Posts : 61
   Posted 11/4/2006 12:13 PM (GMT -7)   
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
Regular Member


Date Joined Jul 2006
Total Posts : 113
   Posted 11/4/2006 12:31 PM (GMT -7)   

Jay:

Given your diagnosis was Oct. 18, I assume your biopsy was a short time earlier.  A surgery Feb. 6 is not far off from the earliest date you would want anyway.  The rule of thumb is to wait at least two months minimum after a biopsy to allow the prostate tissue inflammation to subside before a prostatectomy.  I had my biopsy mid-April and was not diagnosed until the second opinion around mid-May.  I had surgery in August, about the same time schedule you are on at present.  PCa is a slow grower;  you're OK for an early Feb. surgery.  However, like you perceive, the wait time is somewhat nerve-racking.  I didnt' think the surgery date would ever arrive....but, as everyone will tell you here, it does!  Sounds to me you caught your problem early.  Think positve.  A good result is ahead.

 


JayMan56
Regular Member


Date Joined Oct 2006
Total Posts : 61
   Posted 11/4/2006 12:53 PM (GMT -7)   
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
  • 56 year old male, divorced
  • Diagnosed: 10/12/06
  • Gleasons: 3+3, 3+4
  • Last PSA 7/6/06: 2.1
  • Scheduled a DaVinci Robotic procedure for Feb 6th
  • In control, but partially terrified about the future


PLDBrandon
New Member


Date Joined Nov 2006
Total Posts : 10
   Posted 11/4/2006 1:38 PM (GMT -7)   
I am brand new to this site as well.

I am a highschool student assigned to research prostate cancer and I have been reading these boards and they have been very helpfull and hopefull and inspiring.

Thank you for your story and all the info everybody I really have learned alot about cancer and hope in general

Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 11/4/2006 1:54 PM (GMT -7)   

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!


Signficant Other diagnosed: 10/30/06 (age 63)
PSA: 3.7 (up from 3.4 prior year)
Gleason: 3+3
Biopsy: 1/10 positive, 5% cancerous, right apex.
Treatment:  Undecided

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 11, 2017 10:22 AM (GMT -7)
There are a total of 2,903,989 posts in 318,704 threads.
View Active Threads


Who's Online
This forum has 158116 registered members. Please welcome our newest member, Cindy Cauley.
376 Guest(s), 13 Registered Member(s) are currently online.  Details
PeteZa, oldbeek, TAD4207, island time, eldonkey, Girlie, Laugh and live, getting by, Skypilot56, artvark, TxBart, Tim Tam, iPoop