Just diagnosed

aguylikeyou
aguylikeyou Member Posts: 10
edited March 2014 in Prostate Cancer #1
I'm 45.. just diagnosed and now I have to decide on the treatment. No history in family, total shock.

Cancer is just in prostate. Met with radiologist and have appointment with surgeon for consult. I am overwhelmed.

Question.. for those under 50 , why did you choose the option you did? Radiation VS Surgery. How was/is your recovery, mentally and physically, sexually.. I am stressed beyond words- but I think you understand.

Comments

  • RRMCJIM
    RRMCJIM Member Posts: 149
    #2
    Hang in there...it is
    Hang in there...it is overwhelming at first... take a deep breath...start reading on this site and others....there are some great books out there with tons of info. I am one year post op, still have some dribbling at times, usually if sneezing, or lifting heavy. But life does go on, and things are looking normal again.
    Jim
  • lewvino
    lewvino Member Posts: 1,010
    #3
    Yes it is stressing but
    Yes it is stressing but relax. Be glad they found the cancer and now you can take care of it!
    My dad is a prostate cancer survivor since being treated back in 1997 and I just had treatment in Aug. 2009. I'm age 55. Was shocked, etc as you are. It helped me to read as much as I could about treatment options and talking to others in person, on the phone and via email.

    First find out your PSA value and your Gleason score. That will help you to also decide on your treatment. I chose the Davinci Robotic surgery. If you go with Davinci Surgery GET A VERY EXPERIENCED SURGEON. Not just a couple hundred. Look for some one way up there in the numbers since experience counts on the ROBOT. I went to Vanderbilt University in Nashville with a surgeon up in the 1,000's under his belt.

    My recovery was fast, could have gone back to work in about 2-3 weeks but took the full time off alloted to me from work of 7 weeks. Didn't need it but took it anyway. Physically doing great, feel better then I have but also as pre surgery decision I lost 50 pounds. I'm sure you have read of the surgery side effects of urine control and sexual functioning. I am at 8 months post surgery using no pads and having success in the bedroom with the help of Levitra. Others on the forum you will read are still struggling so there are no promises of course with any treatment.

    Mentally - When I got my first post surgery PSA test result of 0 I literally cried for joy. Because of having a positive margin (Cancer to the very edge of the prostate) I am getting my PSA checked about every 3 months. So far 0's but the closer the date gets the more nervous I get! I have another test coming up in June.

    If you want to talk via phone just let me know. Not a doctor-- just another Cancer survivor.

    Larry age 55
  • jminnj
    jminnj Member Posts: 129 Member
    #4
    Just Like You
    I am 47, no history, then there it was. I opted for surgery.

    I wanted the cancer out of me, plus I wanted what I thought was the best option if there was recurence. I heard a number of folks who had radiation and then needed surgery afterward and what they went through. I was a candidate for watchful waiting but again did not want what I perceived to be the anxiety associated with the testing to see if the numbers went up.

    Having said that, each one us goes through our process of trying to figure out what is best. What is best for one person, may not be the best for another. So do all the research you can, talk to your wife/girlfriend/significant other about all the options, their side effects, etc. They need to be a part of the discussion.

    I had robotic surgery January 21. Had a catheter for a week (standard), and then was on my way. Recovery has been good, within about 3 weeks I was back to doing everything I was doing prior to the surgery. Incontinence is at a minimum, I do need to watch the caffeine and alcohol intake as that appears to be a trigger for needing to go more and more frequently. As for sex, a little slow, but the pills help. Overall, getting a little better each and every day.

    I wish you all the best as you move along on your journey. Welcome to the brotherhood. Keep us posted. Take in all of the information you can get. The guys on this board are a great resource/sounding board/compatriate.

    Take care, God Bless.
    Joe
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    #5
    Aguylikeyou
    It's amazing how many I have been runing into at earlier and earlier ages for PCa. First, take a deep breath and relax. Read through this board and you will learn many things. Get some books and start reading...and then read some more. If your gleason is a 6 or less you have some time to make a very educated and informed decision...but you have to put in the time to research as much as you can...it will not be easy but you owe it to yourself to make the best decision you can for you and the family. Many posters on here are very knowledgable about many treatment options and you can learn from them then go test it on your own with your own reserach and discussions with Dr.s Ask questions...none are ever wrong questions. know that it will get exhausting trying to determine but that is just the process and you have to carve out the right choice for you alone with your family to live with a treatment choice you end up deciding on. Here is my story and path plus some reading options that have been recommended by many on here:

    52 years old
    PSA 9/09 7.25
    PSA 10/09 6.125
    Diagnosis confirmed Oct 27, 2009
    8 Needle Biopsy = 5 clear , 3 postive
    <20%, 10%, 10%
    Gleason Score (3+3) 6 in all positive cores

    11/09 Second Opinion on Biopsy slides from Dr. Koch
    (4+3) = 7 5%
    (3+4) = 7 10%
    (3+4) = 7 10%

    Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined

    Da Vinci performed 12/29/09 - Dr. Hollensbee & Scott

    Post Surgery Pathology:
    Prostate size 5 x 4 x 3.5 cm Weight: 27 g
    Gleason: Changed to (3+4) = 7
    Primary Pattern 3, 80%
    Secondary Pattern 4, 18%
    Tertiary Pattern 5, 2%
    Tumor Quantitation:
    Greatest Dimension, Largest tumor focus: 19 mm
    Additional Dimension 18 x 15 mm
    Location, largest tumor focus: Right posterior quadrant
    Multifocality: Yes
    Greatest dimension second largest focus 10 mm
    Location: second largest focus: Left Posterior quadrant
    Extraprostatic extension: Yes
    If yes, focal or non-focal: Nonfocal
    If yes: location(s) right and left antero-lateral
    Seminal vesicle invasion: No
    Cancer at surgical margin: No
    If no, closest distance with location: less than 1 mm, right posterior quadrant
    Apex involvement: No
    Bladder involvement: NO
    Lymph-vascular invasion: No
    Perineural invasion: Yes
    Lymph nodes: 9 from right pelvic 0/9 positive
    Stage: pT3a, pNo, pMX
    All nerves sparred - found two additional pudendal arteries

    FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE

    Virtually Pad free 2-20-10

    Next PSA scheduled for 5-26 Results 6-2-10

    Early on started on Viagra 100mg pills cut into 4ths so 25mg per day dose then a full 100mg on every 7th day.
    Also bought pump and used sporadically to get blood flow to member. Within about three weeks or 5 weeks from surgery (cannot remember but probably posted on CSN somewhere) had usable erections.

    Currently only need ¼ pill to get usable .
    Recommend-Guide to Surviving Prostate Cancer-Second Edition
    Dr Patrick Walsh
    Recommend-The First Year Prostate Cancer-An Essential Guide for the Newly Diagnosed
    Chris Lukas
    Recommend-Saving Your Sex Life-A guide for Men with Prostate Cancer
    Dr. John Mulhall
    Prostate Cancer Meet The Proton Beam-Apatient's Experience
    Fuller Jones
    Recommend-You Can Beat Protate Cancer and you do nto need surgery to do it
    Robert J. Marckini
    Recommend-Surviving Protate Cancer without Surgery-The New Gold Standard that save your life and life style
    Dr Michael J. Dattoli
    Conquer Prostate Cancer
    Rabbi Ed Weinsberg
    Recommend-Eat to Beat Prostate Cancer Cookbook
    Ricketts
    Page with Free Guides to Prostate Cancer and Exercise and Nutrition
    http://www.pcf.org/site/c.leJRIROrEpH/b.5814067/k.C966/Guides.htm


    Comprehensive Book list on Prostate Cancer - http://www.wellnessbooks.com/bookstore/

    http://www.havasupaitribe.com/waterfalls.html
  • Kongo
    Kongo Member Posts: 1,166 Member
    #6
    Just Starting the Journey
    Guy, you have joined a very select club and there are many here to help you sort through the process. All of us have been in your shoes and were initially overwhelmed with the diagnosis, the ramifications, and what our next steps should be.

    Take advantage of the many posts in this forum to help you start your search. Not only do those who post here really, really care about you as a man and brother in this odyssey, but their personal experiences can help you foucs your own course of action.

    In my own experience, I was diagnosed a month ago. Stage T1c, Gleason 3+3=6, prostate volume 47 ml, DX PSA = 4.3. DRE normal, and no physical symptoms. Age 59. In the last month I have read 9 books on prostate cancer and perused over 40 clinical studies. I have consulted with urologists, oncologists, and three seperate radiologists. Still haven't made a final treatment decision but am closing in on one.

    One thing everyone here will tell you is that there is no silver bullet. Each course of treatment has pros and cons. If your prostate is an early detect cancer with a Gleason score of less than 7 and a PSA less than 10 you have many options. Radiation, surgery, and active surveillance all have comparable survival and cure statistics so it really becomes a matter of choosing between the side effects of each course of treatment.

    Strongly suggest you consult with many experts and get their opinions. Make sure you ask plenty of questions. Surgeons tend to favor surgery. Radiologists favor radiation. (What a newsflash). Nobody but you can make the decision that is best for you.

    Get copies of all your records, read the books that are available and the studies that are all over the internet.

    Many here have opted for surgery. Fewer who post have had radiation (either proton or photon). They all have the same long term survival stats. Regardless of the treatment course you choose, there WILL BE an impact on your urinary and sexual function. You can't get away from that. The prostate is central to normal sexual function and the urethea passes from the bladder to the penis straight through the middle of the prostate. The trick is looking carefully at the side effects for each of the treatment options and determining which will have the least impact on your version of quality of life.

    I'm so sorry that you find yourself in our group but know that we all wish the best for you and that our individual experiences may help you sort out what course may be best for you.
  • tomkat100
    tomkat100 Member Posts: 1
    #7
    Kongo said:

    Just Starting the Journey
    Guy, you have joined a very select club and there are many here to help you sort through the process. All of us have been in your shoes and were initially overwhelmed with the diagnosis, the ramifications, and what our next steps should be.

    Take advantage of the many posts in this forum to help you start your search. Not only do those who post here really, really care about you as a man and brother in this odyssey, but their personal experiences can help you foucs your own course of action.

    In my own experience, I was diagnosed a month ago. Stage T1c, Gleason 3+3=6, prostate volume 47 ml, DX PSA = 4.3. DRE normal, and no physical symptoms. Age 59. In the last month I have read 9 books on prostate cancer and perused over 40 clinical studies. I have consulted with urologists, oncologists, and three seperate radiologists. Still haven't made a final treatment decision but am closing in on one.

    One thing everyone here will tell you is that there is no silver bullet. Each course of treatment has pros and cons. If your prostate is an early detect cancer with a Gleason score of less than 7 and a PSA less than 10 you have many options. Radiation, surgery, and active surveillance all have comparable survival and cure statistics so it really becomes a matter of choosing between the side effects of each course of treatment.

    Strongly suggest you consult with many experts and get their opinions. Make sure you ask plenty of questions. Surgeons tend to favor surgery. Radiologists favor radiation. (What a newsflash). Nobody but you can make the decision that is best for you.

    Get copies of all your records, read the books that are available and the studies that are all over the internet.

    Many here have opted for surgery. Fewer who post have had radiation (either proton or photon). They all have the same long term survival stats. Regardless of the treatment course you choose, there WILL BE an impact on your urinary and sexual function. You can't get away from that. The prostate is central to normal sexual function and the urethea passes from the bladder to the penis straight through the middle of the prostate. The trick is looking carefully at the side effects for each of the treatment options and determining which will have the least impact on your version of quality of life.

    I'm so sorry that you find yourself in our group but know that we all wish the best for you and that our individual experiences may help you sort out what course may be best for you.

    Just starting the journey
    Hi, Guy and everyone else. I'm new to the board and this is my 1st post. Diagnosed in '05, opted for (open) radical prostatectomy. I was lucky enough to find a local surgeon who had done 1000s of surgeries, with a high success rate (success in my mind being measured by urinary control and erectiile ability. For the most part, I've done very well. As several previous posters have noted, recovery from surgery can be more of an annoyance than dibilitating. I was 63 when I was diagnosed, Gleason 7, with no seminal or lymph involvement. As the healing process began (Oh, how I hated that catheter) I was surprised by the occassional "squirt" when plunking down on my butt-conforming car seat, or hitting bumps while riding my mower. That didn't last long and hasn't been an issue since. Overall, not a lot of fun, but doable. Good luck to you as you have to start down this unfortunately well worn road.
  • 2ndBase
    2ndBase Member Posts: 220
    #8
    Get the stress out
    At 52 I had psa of 24 and gleason 9 and was given a 50% chance to survive 2 years. That was over 6 years ago. I had to take one shot of lupron to shrink the tumor and then had 40 radiation treatments and no treatment at all since then. The radiation killed all the cancer in the prostate as was confirmed with a biopsy about 16 months ago. My cancer had already spread so ther was no point in doing surgery.
    I decided to get all the stress out of my life and that has been the main reason for my amazing survival. If you only do things you enjoy and avoid worrying about things that dont matter life is good. I still work, play golf, garden and enjoy every day I have left. You will be fine if you make the decision to get treated and accept it and get your life under control with the help of people who love you and go on for a long happy life.
  • steckley
    steckley Member Posts: 100
    #9
    2ndBase said:

    Get the stress out
    At 52 I had psa of 24 and gleason 9 and was given a 50% chance to survive 2 years. That was over 6 years ago. I had to take one shot of lupron to shrink the tumor and then had 40 radiation treatments and no treatment at all since then. The radiation killed all the cancer in the prostate as was confirmed with a biopsy about 16 months ago. My cancer had already spread so ther was no point in doing surgery.
    I decided to get all the stress out of my life and that has been the main reason for my amazing survival. If you only do things you enjoy and avoid worrying about things that dont matter life is good. I still work, play golf, garden and enjoy every day I have left. You will be fine if you make the decision to get treated and accept it and get your life under control with the help of people who love you and go on for a long happy life.

    Thanks
    2ndBase,

    Thanks for the insights ... I needed that.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #10
    2ndBase said:

    Get the stress out
    At 52 I had psa of 24 and gleason 9 and was given a 50% chance to survive 2 years. That was over 6 years ago. I had to take one shot of lupron to shrink the tumor and then had 40 radiation treatments and no treatment at all since then. The radiation killed all the cancer in the prostate as was confirmed with a biopsy about 16 months ago. My cancer had already spread so ther was no point in doing surgery.
    I decided to get all the stress out of my life and that has been the main reason for my amazing survival. If you only do things you enjoy and avoid worrying about things that dont matter life is good. I still work, play golf, garden and enjoy every day I have left. You will be fine if you make the decision to get treated and accept it and get your life under control with the help of people who love you and go on for a long happy life.

    I remember when we spoke shortly after I was diagnosed
    you gave me the same advice..........Thank you again........at that time I was conpletely stressed out..........now, I simply go on with my life...........Ira
  • DFoye
    DFoye Member Posts: 3
    #11
    It's a good thing you know about it now
    I assume you had symptoms that led to your diagnosis, as typically tests don't happen until you're 50. That's when I found out, just after my 50th birthday. I wish I had know about it sooner. At that time, my PSA was 15 and my initial biopsy showed a Gleason score of 6. (Post surgery biopsy showed a Gleason score of 7. I opted for a Radical Prostatectomy because I didn't want to worry about the Cancer coming back for the rest of my life. It has been 6-1/2 years and my PSA has been consistently non existent, which is a good thing. But, there have been sexual side effects. Fortunately, I have a wonderful and understanding wife and things are reasonably good. Are you married? I am here if you need to talk.
  • Sortie
    Sortie Member Posts: 8
    #12
    Understand
    The most difficult time for my husband and me was finding out and facing all of the new information head on, with a force and shock that only the families on this site can really understand.
    My husband had his surgery two weeks ago today. Two weeks ago, I really didn't have a sense of hope but here we are two weeks later and life seems more normal than I could have ever believed.
    My husband selected the radical surgery because he wanted to make sure(as sure as possible anyway) that the cancer was completely out.
    The other options (seeds, radiation, and robotics) do not offer that full vision inside the body.
    Most importantly, GET ANOTHER opinion.... Because we were in shock at the diagnosis, we were going to settle on our local hospital (in a major city). But my husband's good friend said..SECOND OPINION and that saved my husband's life. After surgery, our DR shared that my husband probably had had PC for ten years...
    OH, and he had been doing PSAs and sonograms...surprise...surprise!!!
    We live near Johns Hopkins. We called the clinic, followed their directives and sent his bio slides for a second opinion. From there, he called for a URO appointment,got into JH in two weeks, and life started to fall into place.

    ONCE, you start on a path for information, you will find the right answers and make the right decisions for YOUR body. This is such an individual decision.
    I still remember the first night I found this life saving site.... our anxiety, fear, and shock were all overwhelming.
    SECOND OPINION......YOUR own body....Keep this site bookmarked.
    Peace.
  • Sortie
    Sortie Member Posts: 8
    #13
    2ndBase said:

    Get the stress out
    At 52 I had psa of 24 and gleason 9 and was given a 50% chance to survive 2 years. That was over 6 years ago. I had to take one shot of lupron to shrink the tumor and then had 40 radiation treatments and no treatment at all since then. The radiation killed all the cancer in the prostate as was confirmed with a biopsy about 16 months ago. My cancer had already spread so ther was no point in doing surgery.
    I decided to get all the stress out of my life and that has been the main reason for my amazing survival. If you only do things you enjoy and avoid worrying about things that dont matter life is good. I still work, play golf, garden and enjoy every day I have left. You will be fine if you make the decision to get treated and accept it and get your life under control with the help of people who love you and go on for a long happy life.

    Peaceful Advise
    Thank you for your wise and patient words.
    Peace to you and your wife.
    Sortie
  • g8rb8
    g8rb8 Member Posts: 18
    #14
    Welcome to the club!
    I was also diagnosed at 45 during a routine physical almost a year and half ago. No previous symptoms, just a prostate that "didn't feel right" that led to another DRE, PSAs, biopsy and then the big day. Turns out it was contained, post-surgical was Gleason 7, T2C.

    I ended up choosing the daVinci procedure for several reasons. I too, wanted it out of me for one thing. I personally felt more comfortable with the laparascopic part of the procedure vs. the open surgery. But it all comes down to the experience of your surgeon whichever course you take (if you choose surgery.)

    My choice was surgery instead of radiation due to the possibility that going radiation-first as a treatment option might cause issues with surgery later on if it recurred. I wanted to choose an option that left more options open to me later.

    My surgeon also used a process during the daVinci called hydro-dissection. This uses water to lift the nerve bundle off the gland, making it easier to preserve the nerves and leave you with a better chance at keeping urinary control and erections in your life... check this out. Ask if it's available where you are. Mine was at the Shands/University of Florida hospital in Gainesville.

    I know everyone here isn't as fortunate, but I had urinary control from the time the cath was taken out a week after surgery. I only leak a small bit when doing heavy physical work - lifting large amounts, etc. Do a google on "kegels." This helps build up the secondary muscles in the floor of your pelvis that help you keep control. I started doing them several weeks before the surgery and have since then. It helps a LOT. Erections returned right on schedule and I'm only using ED meds on a very seldom basis now. I went on a four day backpacking trip with a group of high school boys four months after the surgery in the hills of western South Carolina and had zero problems. I'm now running again for the first time in a long time and about to run a 5K in a few weeks. I couldn't be happier with how things have gone for me.

    The real test is going to be what you're comfortable with. Ask EVERY single question you can think of.... record the conversations with the docs... you wont' remember them five minutes after you leave the consult room because you are stressed. That's perfectly normal.

    REad this board and ask tons of questions here. Let us know how things are going. You definitely are a guy like me. Welcome to the brotherhood. Get on the board here and talk it out. Talk it out with your partner/wife also. They're going to be VERY important to your recovery too. And they need to be involved in the process. Prayers for peace and good outcomes for you. Let us know how it goes!

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