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Posted 2/23/2007 6:16 PM (GMT -8)
Hello

I'm 48 years old and this monday I got the results from my biopsy and was told that it was positive (funny how in this case positive is a negative).  This came after I had a PSA test in November that showed a 4.5.  The reserves require this be followed up with an exam.  I went to my doctor he did the digital exam thing and said my prostate seemed a little asymetric.  He refered me to a urologist who did the same digital exam and he said my prostate was too hard so I should have it biopsied.  6 weeks later (HMOs) I have the biopsy and for the last part of this week my life has changed.

I've tried to talk with family and friends and I get the sad eyed "i'm sorry" "you'll get throughthis" or they caught it early everything will be fine.  I'm sceduled for a bone scan in two weeks and that has me scared.  I see my life ending or one of pain  and without the ability to make love to my wife.  My little girls are very young 14, 8 and I think I won't seem them graduate from school or walk them down the isle.  I fluctuate from being optimistic to knowing for sure I have little time to live.  I know this is mostly in my head.  I've looked for anyone who can talk or chat with me to let me know what I'm going through is normal or to say something to reasure me.

PSA 4.5

GLEASON 3+3

thank you for letting me vent.  I'm so very scared

Posted 2/23/2007 6:28 PM (GMT -8)

Aztec1958

You have found the right place to get the answers and support that you need.  Some PCa people never find a forum like this, but it appears you have found it early.  You will receive a great deal of very valuable advice here. 

We do survive prostate cancer.  The statistics are in our favor.  The medical community is getting better every day in insuring a quality life for us.

Keep coming back here every day and reading everything you can find.  Also take a look at YANNOW.net for more assurance yet.

bgd

Posted 2/23/2007 6:33 PM (GMT -8)
Hi Aztec!

Welcome to this place no one wanted to be but are so very glad we've found.  Never will you find more information, sharing, caring, prayers, and support in one place.

Please start thinking positively.  The important thing at this stage is to rid yourself of the cancer.  You are young.  Most of the younger men posting on this site have had positive outcomes with less side effects (my opinion) than the older ones.

Patience is the important thing in overcoming all of this.  You are worried about ED (erectile dysfunction) . . . so check out all options of treatment and pick the one that's best for you and that will allow you to retain the ability to have sex with your wife.

Remember, however, the important thing is to get rid of all cancer cells so that you WILL see your little girls grow up AND your grandchildren.

Positive thinking only will get you through this.  Mind over matter and positive thinking will rid you of any remaining posibility of cancer once the main part is removed.

Please stay with us; look through the many postings on this site; ask any questions you like and PLEASE keep us posted as you progress.

{{{{{{HUGS}}}}}}}}} to our newest member and his family.

;o)  Linda & Bob

Posted 2/23/2007 6:50 PM (GMT -8)
THANK YOU very much for responding. I've never thought of myself as a wimp or coward but I find that every day now I'm afraid. I know I will need the support of others who have been through this.

My doctor is very confident on the Davinci procedure he uses. If anyone has had that procedure could you let me know how it went.

He has performed over 2000 operations and is confident he can ensure that the nerves will be okay.

I really am grateful for any words of support
Posted 2/23/2007 7:00 PM (GMT -8)

    Aztec,  Sorry to welcome you to the club.  Your are near my age with similar numbers.  My opinion would be surgery.  Just find a Dr. that is skilled and that you are comfortable with.  Also that the Dr. understand's your concerns for regaining your function.  As early as it is they should be able to get all the cancer and you should never have to worry about it agian.  Plenty of information and help here.  Click on Chat at the top of the page and check in the chat room.  Some of us have been going in there on a regular basis chatting.

  Good Luck.....KW

Posted 2/23/2007 7:20 PM (GMT -8)

Hello aztec,

I'm sorry you have to join the rest of us, but you are among friends here. Like you we were all blind sided by this freight train called PCa. I felt just like you scared, sad, confussed, angry, and somewhat helpless. This was just one year ago; funny how time goes by so quickly. Now I feel very lucky to have a future to look forward to.

You have mentioned that your urologist has performed over 2000 DaVinci procedures. That is very important because there is no substitute for experience. My surgeon had completed about a thousand last year when it was my turn. The surgery went without a hitch, and I was home in 36 hours.

The advice I'll give you is to start now and get into top physical condition. This will help your recovery, and practice the Kegel exercises. If you have any worries we are here for you.

Glen 

Posted 2/23/2007 7:31 PM (GMT -8)

Aztec - How glad I am to see you posted on this forum! This place is the best that I've found and I know you'll get much support & hope here, as my husband and I have. You are young and that can work greatly in your favor.  I'm sure you've noticed that many of the guys here are in your age group and have had and continue to have very good outcomes. 

Telling others who are not going through this is difficult - their replys are meant to comfort and to ease the emotion of the situation.  We've all experienced that and probably have done the same in the past!  Well, we know better now.

Keep posting here letting us know exactly how you feel and your progress. So many people here are smart and wise and will also give a person a kick in the behind if needed!  Now isn't that just like family?!

Aztec, The truth of the matter is we're all wimps and cowards - sometimes.  We're all brave and strong - more often than not.  You can be whatever you need to be here.

We're all rooting for you,

Susan

Posted 2/23/2007 8:55 PM (GMT -8)

Aztec:

Hate to see you have to join this group, but welcome.  Think you will find that alot of your concerns are not uncommon.  This is a couple's disease, so hopefully your wife will become involved in the decision making process.  Your diagnosis appears that you have caught it early and probably any treatment modality will get you a cure, so research and choose the treatment that has the side effects you are willing to accept.

Good luck to you.

Dutch

 

Posted 2/23/2007 9:05 PM (GMT -8)
I want to thank everyone who has taken the time to give me encouragement. It's time to go to bed but I will sleep a little better knowing that there is a community I can come to for advice and support. I will be back and since this is now a major part of my life this site will no doubt replace my favorite sports teams message board as my most visited

good night and thank you all very much
Posted 2/23/2007 9:14 PM (GMT -8)
Aztec: I was also like you. The news of PCa hits you like a freight train and that's normal and the more research you do, the better you feel about dealing with this. You've received good advice here. Your numbers sound very favorable. Just take your time in making your decision for therapy. I suggest Dr. Peter Scardino's "Prostate Book." It is uplifting, full of great information and not at all scary. Read it, take a little time and you'll make the right decision. You'll be fine.
Posted 2/23/2007 9:45 PM (GMT -8)
Hi Aztec,

You found the best place to be for hope, understanding and support. I'm an old guy with great grandchildren who had the very same fears on the day I was diagnosed. My numbers are nearly the same as yours so you make me feel young again!

No matter what treatment you choose, and there are many, it is most important that you are comfortable and confident in the doc that handles your case. People here say to choose a treatment then find the best, most experienced person to do the job. That is good advice. Confidence in the doc gives hope and hope leads to a good attitude. Whatever treatment you choose, the only things you can contribute are a healthy body and a great attitude. We can help. Please stay with us.

Good luck...

Jim
Posted 2/24/2007 4:46 AM (GMT -8)
Aztec: Just a follow up on the others. I spent the first day and night on the internet. This came as a great site. For the next forty eight hours after I got my diagnosis I thought of nothing else. I reserched everything I could and became an "expert" in the forty eight hours to the point of overload.

At this point you need to sit back and take a breathe. I know everyone says you have plenty of time but being a type A personality I was ready to move ahead. I had chosen surgery from the moment I was told and although I have heard and read of all the other treatments having the cancer removed and being "cured" was more important than anything else. My only choose was what type of surgery. Because of my good number of friends who are doctors and others in the medical field and my own preference I have chosen robotic and I am scheduled for March 12th at John Hopkins. Fianlly , you dorealize ( although you always think about it ) that PCa is curable and you go on with your daily activities. You cannot have surgery until about 8 weeks after a biopsy anyway.   Also I have not kept ita secret .In conversation I have told family, friends and associates. Great wealth of information comes from unsuspecting sources. Barrister                                                                                                                                                           

Posted 2/24/2007 6:26 AM (GMT -8)
it's a snowy day where I live and since I don't sleep late anyway I thought I would pose a question to the other members of this club. I find that not only dose Prostate cancer scare the hell out of me but I find that everything I'm being ask to do, put up with and accept has a feeling of indignity. let me explain in my life I've never had to give myself an enama, sit with my knees up to my chest as instraments are place up into my rectum. Now I'm being told that I may have to wear the equivulant of dipers because I won't be able to control my urine, I might have to use things like pumps or needles to have sex(real erotic) and if I can have sex it will be a dry ejaculation. Is is just me or do others find that this disease robs us of our dignity?

With any luck I'll have a long life after this but what is the quality of that life?
Posted 2/24/2007 7:06 AM (GMT -8)

I, too worried and was horribly anxious about all of the misery and indignity and discomfort I would have to submit to.  I began to realize that I was just wearing myself out and that I had to find a way to cope with the fact that I have prostate cancer.  It's my new reality and it's serious business.  This stuff can kill you and you're dead for a long time.  I learned as much as I could about prostate cancer, what the numbers mean and the treatment options.  It consumed me for months.  I finally decided that I would do all that I could to help myself and my medical professionals.  The indignities and discomforts will seem small in ten years when I am cancer free and NOT peeing, or pooping in a bag. 

Yes, your ejaculate will be dry.  In fact, there is a thread here about that very subject.  Some guys think the sensation is worse, some think about the same, and a significant number think it's better.

I am not happy that I have cancer, but neither am I constantly agitated.  I tell everyone and tell them I'm going to be fine and just generally put on a brave face.  It helps me.  Only here do I bare my soul.  By the way, you get to vent as much as you want here.  Not a person will think less of you. 

Keep Your Mach Up,

Bill

Posted 2/24/2007 7:14 AM (GMT -8)

Aztec

If you could provide more data on your biopsy it would be helpful. You are right when you first get the diagnosis it's like getting hit by a bus. After I did all the research and knew I could be cured (thru robotic surgery) I did not care about dignity just the desire to get this thing out of my body. The surgery was a lot less than I was scared about. Did not need any major pain medications after the day of surgery.Even the week with the catheter was no big deal. I am now 4 months post surgery and I only leak urine when I sneeze, cough or really, really overwork myself. I started walking the halls of the hospital right after surgery and now am up to 45 minutes every day on my treadmill. Sexual functions are improving better than I expected with the help of levitra and a pump. Have acheived many usable erections. So as you see there is light at the end of the tunnel. All of this has been worth it to me knowing that the cancer is no longer with me (first post op PSA less than 0.02 which my urologists says is the equivalent of non detectable). Nver be afraid to ask questions here, as they say there are never any stupid questions. This forum is comprised of a great group of people that are always ready to provide support and information. Use us as needed for any thing you need.

God bless and god speed.

Posted 2/24/2007 7:15 AM (GMT -8)
aztec,

While your chances of not having advanced PC are very high you are right in knowing that your life will change. I still battle the depression that waves over me at times because I am no longer the same as I was and my life has changed because of it. The disease does rob you. Saying all that I feel fortunate that my PC was caught very early and I will be around to see my grandson grow up and do things with him and any others that come in the future. When I was at the point in my journey that you are I also was going through the same thoughts. I quickly got past the "my life is ending" stage but the mystery of what changes I would endure stayed with me all the way to now. Once you research and gather information you will quickly find that if you choose surgery the responses to surgery vary a lot. Your age will help you with the incontinence and impotency complications. If your surgeon has done over 2,000 Da Vincis then you have a very experienced surgeon. One thing to understand is that although the nerves are spared does not mean that you will be potent right after surgery or will regain it in a matter of months. Some have but most do not. The incontinence is another matter as regaining control seems to come fairly quickly for most men that have had surgery being from a few weeks after surgery up to about four months. The dry ejaculation is a fact but most men report that the orgasm is as good if not better then before. There is nothing good about the situation compared to your life before the disease but when looking at the alternative there is a lot to be thankful for and rejoice.

Stay with us as through your journey and we can help as much as possible. Walking those girls down the aisle you do not want to miss and what a vision that brings.

Peace be unto you,

Tamu
Posted 2/24/2007 7:16 AM (GMT -8)
Aztec

Forgot to mention and I am sure a lot of guys will agree. The NEW orgasms are better than the old and being dry means nobody argues about the wet spot.

Daveed

Posted 2/24/2007 9:30 AM (GMT -8)
I will be honest with all of you that have responded. I get very emotional right now when I read the supportive responces I get. The next time I talk with my urologist I will try and get a more accurate picture of my biopsy. I find watching comedies right now helps and following my favorite football teams off season moves is a distraction and even work helps. Its the down times when I have time to think about whats in and what could be in me that scares me. What depresses me is the after effects. I think right now what i'm looking for the most is a support system and while my family is behind me I think people who have been through this help give me some positive perspective.
Posted 2/24/2007 10:36 AM (GMT -8)
Yeah, it can be tough in the wee hours. It's the after effects that scare all of us. Get some more info on your Gleason score and staging and etc and post it. Of course, ask your uro what the numbers mean, he's the expert, but there is good knowledge, too.

Regards,

Bill
Posted 2/24/2007 11:22 AM (GMT -8)
Aztec,

You have come to the right place to be reassured that what you are going thru is normal and we've all been thru it at one time or another.  When I first found this place last August (Curtis didn't do the research on this he left it up to me) I was a basket case as any of the old times can tell you.  You will get a lot of great advise and reassurance from this group of wonderful people.

Posted 2/24/2007 1:19 PM (GMT -8)
Aztec - Everyone connected to this forum feels your pain. Most of us have been there. You are very young. I was 53 when first diagnosed and I thought I was very young. You're on the right track by watching comedies. You need to laugh to keep your perspective and you also need to pamper yourself. Although you feel that you've been run over by a bus, this probably isn't the end of the world unless you let it be. The good news is that you can get to the other side of this really quickly and probably rid your body of the cancer. If you are otherwise healthy, you can probably get to the same level of health as before. Take your time to find the best medical resources you can and if you need to travel to do that, find a way to do it. If you are with someone who has performed over 2,000 procedures, you may already have found the right doctor. Make sure to ask him the questions about the experience of his patients with the incontinence and sexual issues that concern you.

The best treatment specialists will be sensitive to your need for continence and erectile function. Most good urologists expect to restore you to the same level of erections as you experienced before surgery, if that is your treatment choice. It may take a while, but with persistence and treatment you and they will probably be able to do it. Dry orgasms aren't the end of the world. My wife describes it as "orgasm without the mess." I always liked the mess, but you probably remember orgasms before you were old enough to ejaculate and know that it's not all bad. I found that during the recovery period, intimacy with my wife increased as the result of this journey and in part because I was forced to become more creative in the bedroom.

With the right treatment, I doubt that you will be wearing diapers. Most of us have used pads for a while, but it is rare for that to be a permanent condition.

I had the da Vinci procedure in 2005. It was relatively easy. I missed two weeks of work. I had almost no incontinence from the beginning except I would have a drip if I made sudden movement, was startled, or got excited such as when the football team I was watching scored a touchdown. I wore a pad in my underwear for about three months to guard against that, although the last two months it was really only for insurance purposes. No one knew that it was there and I rarely had to change it other than at the beginning and end of the day. I went on some major flights for business travel four weeks after surgery and had no problems with urinary issues.

Sexual recovery took longer. My doctor had me using a pump to restore blood flow and prevent atrophy very early on. Until you experience it, it may sound scary and undignified, but my doctor described it as physical therapy for the penis. It seemed ironic to finally be given permission to focus so much attention on that part of my body. There's a lot more motivation to do this type of therapy than, say, after a bone fracture. I have also used Viagra.

The loss of dignity was hard, but frankly after the biopsy, I don't think there was anything more they could do that was worse. I remembered watching my wife go through childbirth three times and I don't think I gave up any more dignity than she did. In fact, I became much more empathetic to her earlier experience. Dignity is something that can only be taken away if you let it be taken away. I decided that I had as much dignity as the people doing their jobs around me and I was actually kind of glad to not be doing their jobs.

The best part is when you get on the other side of the treatment and understand that you have beat cancer! It is surprising how fast that happens, although from your starting point, that's hard to envision.

In the meantime, you need to plan the best strategy and get through it. Pamper and indulge yourself now. Laugh. Have lots of sex. Get in as good of physical shape as you can now. The activity will pick you up emotionally and you'll be better prepared for whatever treatment you pursue. If you're worried about incontinence, start practicing Kegel exercises now. You can do them when you're riding in the car. You can't beat cancer by sitting around getting depressed. Actively pursuing a plan is one of the best ways to beat the depression.

Good luck and God bless you!
Posted 2/24/2007 1:22 PM (GMT -8)

Aztec--

Yes, this is an excellent place to visit. I find myself checking in and out of here several times a day. Always curious to see if something new has been posted.

Let's talk about the emotional side of this. How can I put this? It is the Sh.ts! Over my first two months after the diagnosis I found myself on an emotional roller coaster. Up one day, down the same afternoon. Calm one moment, wanting to shout the next. And, I gotta say, nobody who hasn't had the diagnosis can really have a clue about this specific disease. I AM NOT SAYING THAT WE HAVE IT THE WORST. But I have found those who have not had the disease distinctly unable to really get what this diagnosis means.  All that those above in thread have posted, and more.

I have been through depression, complete loss of libido, anger, frustration, gaining back of libido and still find myself sometimes in a deep funk pondering the "why" of all this for me. Personally, I find myself more content now that I have selected my doctor and treatment (da vinci).

A couple more comments: On this site you'll find sympathy, encouragement, a listening ear, shared experience, helpful counsel and especially, new information shared by those who have been down this road before you. And not just "cheerleading" encouragement, but new information, the real nuts and bolts of this, to help you  gain a more complete perspective.

Towards that end let me remind you that you have a very full life ahead of you. My Dr recently told me that he has never seen a gleason 6 extend beyond the prostate. This is one of the top MD's in the world, who has done something like 1500+ robotic surgeries, so he knows what he's talking about. He had no concerns about me deferring my surgery for another four full months (end of May), the disease is that slow growing...

Anyway, best wishes for a tranquil spirit for you, and may you find the best possible treatment and counsel for an easier road.

Markus

Posted 2/24/2007 2:10 PM (GMT -8)
Aztec

Sorry you have joined the group but you will find some very knowlegable and caring folks that will not only answer your questions but give you support. I too was 48 when diagnoased with two young kids, 9 and 12. I had the Da Vinci done this past January 9th so I am 46 days post op and doing very well althrough things are far from normal and it will just take to get there. I've been back to work for 3 weeks and for the most part feel very well with only an occasional pain. As far as incontenence issues I have been pretty lucky in the fact I just need 1/2 of 1 small pad per day as I just leak a little bit, hopefully in time this will completly dry up. As for the sexual part I have been able to obtain erections pretty well and with out the need of any medications, I would say I am back to 90 to 95% of before surgery but I also admit my drive is not what it used to be, might have something to do with the damp feeling down there or the fact my muscles are healing and when I get an erection I have some pain for a while but this too continues to get better everyday. You can read my Journey under "norskie journey from the beginning" to gain insight as to why I chose to do what I did and what happened before and after surgery. All I can say this has been my results to date and everyone is different as is the decision as to what procedure to have done. I can only share with you what I did and you need to research all your treatment options and make the decision that makes the best sense for you. All I can say is stay positive, take a proactive role in researching the topic and treatment options and once you make that decesion you will feel relieved and can get it done. I chose to have it out as my doctor told me at my age and condition I have 35 years or so of life left in me and because of age and stage of prostate cancer surgery looked the best for me. If you make the decision to have surgery start getting in shape, walking starting kegel excersies as others have suggested I feel that helped me as much as anything. Also if your surgeron has done 2000 robotic procedures that means he is experieced and should be good, no matter the treatment find someone that has done many procdures as this will give you the best chance for the best results. Don't let yourself believe this is a death sentence, you can beat this and be there for your daughters as I plan on being there for my son and daugther. You will go through information overload and will always be looking but don't second guess your decision once you decide. The other fact I learned through all this is once I made the decision and scheduled the surgery the time went by really fast and the day was here for surgery and I am now already 46 days past surgery and on my way to healing. You will see my stats in my signature so you can compare yours to mine. There are many people out there that will help you that have been through this and don't be afraid to talk to them they can help you feel better and support you. I didn't find this site until after I had made my decision to have the Da Vinci procedure but this group has gave me great support and guidence and experiences that helped me get ready for the surgery and recovery period.

Good luck in your journey
norskie
Posted 2/24/2007 2:53 PM (GMT -8)
Aztec, My husband was diagnosised 3 weeks ago. He is 47 and the kids are 10 and 14. For us, there was a huge sense of being overwhelmed. You start leaning one way and feeling comfortable with a treatment option and then a doctor, friend or family member would tell us something to totally put us back to where we started, with no clue as where to look next. We were, like you, lucky to find this forum early on. It is a wonderful place to ask questions or even just vent or post fears. I feel like we have made lifelong friends with people who have no faces yet are kind enough to offer a shoulder to lean on or a kick when you need to be kicked, haha. Like you, my husband is very nervous about the incont. issues. He made comments too about diapers and such. I pointed out to him that they make depends for men that look like an athletic cup. I think that excited him, because he made a comment about looking more stealth.

Since making our decision, we chose the da vinci, and making the appointment, there has been a huge weight lifted off our shoulders. I have even watched two surgeries on the computer. The youngest son watched part too. When you make your decision, don't look back. Don't think about the what ifs, just focus on being here to walk your daughters down that aisle. Keep posting and we will to. We have just a little over 2 weeks left before surgery and I remind my husband to do his kegals multiple times per day.

Courtney
Posted 2/24/2007 3:25 PM (GMT -8)
Aztec,

My condolences, but buck up bro! Survival rates are near 100% and you have a *lot* of choices for treatment. 3+3 isn't as bad a Gleason score as others have had. Many docs will considerate those counts still in the moderate range unless most of your cores were positive. How many of your cores were positive, and were they all localized in the same area?
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