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Jim,
Hard as it is do not panic. Do not allow worry and anxiety to force you into a hasty decision. You have time to research the problem and can gain much invaluableadvice from fellow sufferers. As Terry suggested, read the experiences of other members, it really is an enlightening experience . Doctors often are not too inclined to dwell on, nor be entirely clear with problems you may face after surgery......this is where members and fellow PCa'ers will come into their own. You might also want to look at the prostate cancer section of www.healingwell.com where you will find equally valuable information. Once again I would stress that before you commit to a course of action you fully research the various courses of action available to you and this includes carefully dissecting the many members of this sites experiences. I wish you well.
Bill
It's quite natural for you to be going through such feelings right now, BUT PLEASE DON'T PANIC, and don't rush into any decision about treatment just yet.
Take your time to absorb the news, get yourself ready and in a calm frame of mind to plot your own course.
Don't let ANYBODY urge you into anything you aren't absolutely sure and confident about.
These forums are an excellent place for you to find all the info you need right now, far more than you could ever take in from those appointments with the medics.
Let's face it...we forget half of what they tell us, such is our worry and anxious state at the time.
Please read through the experiences of our members here.
Look at the stories of guys who have had exactly the same diagnosis as you....PSA level, Gleason, T stage etc.and I'm certain you will discover light and hope.
I found YANA just over 3 years ago, soon after diagnosis and a very grim prognosis.
What I discoverd here really did change the course of my life.
I wish you all the very best, take heart, try not to worry, and get ready to 'Kick ass!' (as I'm over-fond of saying). : )
I was in a similar situation as you, Jim but my urologist did not give me any information as to which procedure would be best and with the least side effects. The only thing he did say was look on the internet and find a procedure that you are comfortable with and go with that. He was not helpful at all and as a specialist one would have expected that he would list my options and their advantages and disadvantages. All he stated was that radiation and surgery had the same side effects but in reality they don't. Radiation treatments tend to have more side effects than radical prostectomy which has more than Laproscopic prostectomy. His advice about going on the internet to look for information was the only good thing he stated. From my internet research I came across the new procedure called HIFU (High Intensity Focused Ultrasound) What I read offered me the least problems with incontinence, almost none 0.6% and a very low erectile dysfunction about 20% but that I believe is considerably less due to the use of Cailis to increase blood flow after the catheter is removed. There are two types Albatherm and Sonablate. You could read my story when it is published in HIFU forum. I had the Sonablate HIFU on March 29,2008 and I am now in the process of recovering. It has been somewhat difficult but no incontinuence. I am not one of the fortunate ones who did not have any pain after the procedure but the doctor gave me pain killers to control the problem. After a week I was off the pain killers and now just trying to get the urine flow back to normal before I can have the suprapubic catheter removed.
Like several of the other guys have stated take the time to check out the stories and if possible contact some of these places with the different procedures as they are more than happy to take the time to explain their procedures and discuss any concerns that you will have. The HIFU places have 1-800 numbers and I suspect the other types of procedures will also have 1-800 numbers so it will not cost you anything in long distance phone charges. The discussion from the various prostate procedural organizations will help calm many of your fears and worries and give you information to help you with your selection.
Take care and may God help you with your selection.
Jim, Jim, Jim...
You sound like me with the initial worry. I didn't tell my wife for 3 days after i found out about my high PSA and everything that goes along with that.
Your family is your support system. Look to them, remind them of the 97% success rate. More than that, REMIND YOURSELF.
Yea, a "stiffy" is nice to have, fun to play with and more fun to have someone else to play with it but what is MORE important is the 99% rest of you. My wife is continually reminding me of that.
I work with 2 men with history of PCa in my small department of 18 people. That's 1 out of 6 people with it. National average is 1 in 6 in a lifetime. Go figure. The oldest is 62 and has had heart bypass surgery 7 yrs ago. He's 6 months post op with traditional surgery. At 2 months post op he was working 6 days a week, 12 hours a day. He's recovering well IN ALL AREAS of functionality.
I know this feels like "one more damn thing". I shared that feeling. Ask for help, ACCEPT help, and talk about it openly. My wife and daughters are my biggest support system. I tease about carrying my "pee bag". It no longer embarrasses my 16 yr old.
Open discussion, open acceptance. Good luck.
Mike
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Replying to:
I have been recently diagnosed with PCa. PSA 17.1 and Gleason 7. I have consulted with 3 centers about treatment. Prostatectomy (I am planning robotic) has been recommended since I am Type A and it is felt (and I agree) that I would fare better knowing the status of my cancer after the operation and still having the option of radiation if necessary (hopefully radiation won't be necessary). Also I have had very severe depression for many years and have only recently (since my diagnosis) sought out the in depth professional help that I need. Because of my depression, hormone deprivation (which I guess is often used in combination with radiation) is not advisable because it worsens the depression.
You may be thinking that I am panicking because of the diagnosis and to a large degree I am, but what I am really panicking about right now is the surgery and the after effects. I have never had surgery other than wisdom teeth removal in office. I have never had general anesthesia (I am sure it is no big deal and that I am worrying needlessly). MY REAL CONCERN IS THIS: If you have your gall bladder removed you heal after the surgery and everything is fine. You feel better than you did before surgery. If you have cataract surgery you see much better almost immediately and it is all over. But with prostate surgery it sounds like you have so much to deal with after the surgery is over. THE SURGERY IS JUST THE BEGINNING, NOT THE END. Worries of incontinence and sexual problems primarily. I guess if you are lucky the urinary problems are basically over in a matter of weeks to a month or two. Who knows for sure about the sexual function. There is so much more variability there. Basically, I am going into a surgery with a normally functioning urinary and sexual system and coming out with something that may be considerably compromised. Yet the reason I am going in is to remove the cancer, not to acquire other problems.
My wife is extremely supportive and my two adult children are bugging me to get something done ASAP. I suppose that I must but I have SO VERY MUCH ANXIETY. I am afraid that I will "freak-out" as the time gets closer or when I arrive at the hospital for the surgery. I am as close to having panic attacks as I think anyone can get without actually having one. I have been taking valium prescribed by my regular physician along with the anti-depressant medications prescribed by my psychiatrist.
Is this EXTREMELY HIGH level of anxiety normal or am I a hopeless case? My psychiatrist says that it is not particularly unusual and that I will just have to face it and deal with it, but I don't think he really understands how bad my anxiety is. I will go over it again with him this week.
Has anyone out there felt this bad? Is there any hope for me? I just hate to part with my normal functions and possibly end up with compromised functions but I know that I must part with the PCa.
Thanks for reading this long post. Any advice or encouragement would be greatly appreciated.
I'm the daddy's girl of my father who was recently diagonsed with Prostate Cancer (PSA 6.7, Gleason 6, T2a or b - biopsy revealed cancer in 2/3rds of the protate gland).
1st advice... breath long deep breaths ... in and out... multiple times.
There are lots of options out there available to you. You didn't get prostate cancer overnight and it won't kill you over night. As much as your family wants you to make a decision QUICKLY it has to be the right one for you. Don't cave to other's timelines... make a soft deadline for yourself when you feel you've explored all the options to YOUR full satisfaction. In the meantime, tell anyone pressuring you to "just deal with it" since it's your body and your quality of life you are dealing with.
Personally, after all the research I've completed, you might look into Protom Beam Therapy if it is an option for you (5 centers currently treat prostate cancer, with Loma Linda, California being the one doing it for the longest). It seems to have the lowest side effects and in studies I've seen comparing real time Loma Linda Proton treatment to same stage Radical Prostectamy at John Hopkins, there are similar 5 year non recurrance rates with much less side effects. Just do your homework, understand all the POSSIBLE side effects, and feel comfortable with the pros and cons of the treatment you decide.
Proton Beam (in Florida) is an option for my father (71 years old and very active), and I STRONGLY feel it's the best option for him. After 6-8 weeks of research, I think he might not feel it's worth getting out of his comfort zone and go to FL for 2 months for treatment and may go local IMRT only (while I can't fault him his decision, I can say, he has to be fully commited and INFORMED of the pros and cons of the treatment he has chosen). As a daughter, I want to shake him and say... WHAT ARE YOU THINKING - get your ASS to Florida!!! As a caring human and daughter, after presenting all the pros and cons, I have to respect the decision he makes, even if I feel he should do something else. At the end of the day... it's his body, his life, and his comfort level.
I wish you the best, and just know that whatever YOU decide, it is YOU that has to live with the outcome and quality of life.
I could say if it was me, I'd live with 1-2 less years of life than I might have, if I knew my remainging time gave me a similar current quality of life... OR... if I knew surgery would give me 10 more BONUS years of life past a treatment like Radiation Therapy, I would deal with the side effects. Too bad we don't have a crystal ball to let us know just WHAT is the best decision... it'd make things so much easier.
Hugs to you and your family. If your wife is being cool about things, know it is tough for her and she only wants the best for you... if your kids (aka like me with my dad) are pressuring you... tell them to BACK OFF. Take your time and feel as good as you can about the decision you make.
I didn't and don't feel so relaxed time wise as most of the responders here have counseled. If the stage of things were very early, then I totally agree. But in my case and in Jim's case perhaps it is wise to move somewhat swiftly if one can. My urologist gave us (my wife and I) the treatment options in his office along with the biopsy report. Suggested we make our choice and move it forward without delay, based on our own research, and indicated he would support us in any way he could. My wife was so key for me in those early days. It was distasteful to me to try to read and learn, I just wanted to turn away. I could not pursue things effectively. Perhaps Jim gets a similar feeling. My wife just went to work on it via the phone and the internet. In 3 weeks we got our robotic surgery scheduled. We weren't ready at 2 weeks and we weren't gonna commit to anything till we were both in agreement. I sure hope Jim has the sort of support that I did at that crucial time. Best wishes.
Bill - I totally agree with you that the timeline for yourself and Jim is a bit more "urgent" than that of a man with a PSA less than 10... even if it is in 2/3rds of his prostate like my father.
By saying take your time and set a soft timeline/goal for yourself, I'm only saying don't feel the pressure of your family. Don't be forced to make a decision in a week or two if you aren't comfortable with that decision. But, also I'll say by 4-6 weeks I'd hope you have the chance to read and research all your options to make an informed decision.
As my father's brother (my uncle) passed from prostate cancer in his late 60s after a road of radical prostectomy, radiation, chemo, another round of chemo, and treating it as (no pun intended) "balls to the wall" as he could being diagnosed in his late 50s... dad has a level of fear regarding the aggressiveness in his family genes.
At the end of the day, the BEST thing I can do as his daughter is support his decision and be there for him to help him research options as he has questions. Over the course of 6 weeks, he's varied from Proton Beam to Surgery to IMRT to Proton Beam and now back to IMRT administered locally. He's talked with over a dozen people, and he's 90% sure of his decision.
If it takes 4-6 weeks to research and become comfortable with a decision, I only hope Jim feels the freedom to take the time to feel comfortable and not pressured by his family. I'd never suggest he take a watch and wait approach, nor would I say take a year to decide. My comments were to only tell him you have a few weeks to decide. Even in an aggressive form of prostate cancer, you have a little time to find the best option for yourself - don't let your family push you into something you aren't comfortable with.
Although I didn't have the pre-sentencing (cancer diagnosis) depression like you did, I sure did get it after hearing those disasterous words ... "you've got cancer".
That's what I was told when it was discovered that my PSA was 65 (on routine exam). I immedaitely went home and started reading about prostate cancer on the internet. Read thousands and thousands of documents, crying all the way thru them and I hadn't even had a biopsy yet, just the elevated PSA (with absolutely no symptoms).
I gave up Jim. With a PSA of 65, most of what I read confirmed that a PSA of 20 or higher had most certainly spread to other parts of my body.
I figured that, well, this is it, I'm a dead man walking. I took early retirement cause I didn't wanna work till I died ... which hurt us financally but the wife was very supportive.
I increased my usual two or three nights at happy hour(s) at the bar with coworkers and friends to five nights a week. It got so bad that my wife suggested that I get a part time job just to pay the bar tab so I did. That also meant that I wouldn't spend all day here at the house, alone, with my thoughts ... it was horrible.
I existed this way for a full five years until by PSA doubled so, with added pressure from family and friends I had that awful, disgusting biopsy procedure done. That, plus several scans, concluded that I did, in fact, have prostate cancer but that it had not spread ... I got lucky.
I feel better now Jim. I have completed the radiation seed implant and subsequent course of external beam radiation. I continue with urinary problems but they are lessening. I remain virtually impotent but can feel old yearnings returning ... maybe with time it'll be better.
What I did do Jim is talk to folks on here, they helped a great deal. I learned, for example, that considering the procedures I had done, it might take six months to a year for the urinary and impotence problems to clear up, not the few weeks that both the Urologist and the Oncologist told me.
Stay with this website, it's a good one. Folks on here, including me, will converse with you by email and even by phone if you want.
I am taking this opportunity to say THANK YOU to those who responded to my comments and concerns which I recently posted (my first post on this site). I SINCERELY appreciate each and every one of you for taking the time to read and respond to my post. I also say thank you to those who read my post and just thought about me and what I am going through. This disease is truly a life-changing experience.
I think there will be many of us here who feel the same. From the moment of diagnosis my own life changed forever...and dare I say it?.....for the better, in so many unexpected ways.
I now see what is truly important in life. It's hard to believe I spent so many years worrying over trivial matters and neglecting to nurture fully everything good I had at my fingertips.
I have never appreciated life more than I do now...my wife, my children, my grandchildren, my dog...I could go on and on and 'Bore for Britain', lol, but I think I've said enough.
Good luck on your journey, Jim. You Are Not Alone anymore.
Jim, it is a life changing experience and I agree with George here, it can change it for the better in some ways. That will sound to you at the moment as totally impossible, but wait.
In my pre-diagnosis fantasies about what such a diagnosis would be like and how I would react, I can assure you that I saw myself as the headless chicken in a blind panic. But strangely it didn't turn out like that. Even now that my robotic can be said in many ways to have failed (i.e. I still have some prostate!), I feel very calm and take each day as it comes and as George said, enjoy even the smallest things. My life is full of horizons that I work towards on my way to the next one.
I think you get to see that if you live life as though the worst will happen, then effectively the worst HAS already happened and you live out each day a self fulfilled prophecy of doom.
We do have to remember also that what we have - or maybe what we no longer have for the luckier ones - is PROSTATE cancer.It's not lung, liver, brain or pancreatic cancer. It usually gives us a few more chances. My best friend (younger than me) was diagnosed last July with lung cancer and was gone just after Christmas - 6 months. But he lived each day of those 6 months as though it was the first day of his life. He would have gladly swapped cancers and I felt almost embarrassed to talk about mine with him.
You just have to keep going , Jim. Look for what you can enjoy and forget regrets and all the what might have beens. You have a long way to go yet. Do it.
DON'T FORGET TO LOOK INTO CYBERKNIFE. I WAS NOT ELIGIBLE WITH A GLEASON OF 8 AND DID IMRT BUT A MEMBER OF MY SUPPORT GROUP WENT TO FLORIDA RECENTLY TO HAVE CYBERKNIFE AND IS ENORMOUSLY PLEASED WITH THE RESULTS.
I quite understand fear and or depression when you fantasize about RP. You put it quite clear comparing it with a gall bladder operation, where problems are solved, whereas an RP primarily creates problems.
But why an RP? There are other treatment options and there is the option of no initial treatment and see what happens.
Waht is your age?
You say you are a Type A. Couldn't you try to change to become a Type B? This could involve help by a councellor.
Thanks for your post. I am 58 years old with a PSA of 17.1 and a Gleason 7. I don't feel that watchful waiting is a viable option for me. I will admit that this whole PCa thing is new to me and I have been learning over the past couple of months. I feel that RP is my best option as it is less traumatic than open surgery with a considerably quicker return to normal activities (I just want to get back to normal - whatever that is or will be after the surgery - as quickly as possible).
Because of my Type A personality and because of my wife's and grown son's concerns about me, the doctors that I have talked with and my family (as well as myself) all agree that it would be best to get the gland out so that it can be determined if the disease is confined to to the gland or not. If one has radiation (either external or with the radioactive seeds) you never really know about the extent of the disease. Once radiation has been done you cannot (for all practical purposes) go back and do surgery, but if you have the surgery and it is determined that more treatment is needed you can still have radiation.
Henk, I have sought the help of a therapist, something
I should have done many years ago (perhaps one of the very few good things that has come out of this). Between talking to him and taking the prescribed medication , I feel that I am doing better, but I don't believe that one can change their personality type. In my way of thinking it is like your eye color, hair color, etc. It is what it is.
Hey Jim,
I don't want to confuse you but do you have statistics on RP monotherapy success rates with a PSA of 17? You might want to check on this. Best wishes Pat (Alaska, USA)
