Newly Diagnosed, at Least Stage 2, Maybe Stage 3

sblome

Yikes! It's hard to know where to start with something like this. My wife and I are a bit "gobsmacked" as the Brits would say. I guess what I'd like to hear is other's experiences with a similar diagnosis.

I'm 48, in good health. There is very little history of any type of cancer in my family, except that my great-grandfather on my mother's side died of prostate cancer in the late 1960s at the age of about 85.

My PSA is about 8.0. One side of my prostate is benign, but the other side shows Gleson 7, with Gleson 8 nearest the seminal vesicle. I don't know the "T" score.

I'm scheduled for the da Vinci in a few weeks. I'm going to have a second opinion from an oncologist, but will likely go with the surgery.

I guess the $64,000 question is whether the cancer is still encapsulated or not. My Uro says about 50-60% chance that it has escaped the capsule. He also says he won't know for sure until he goes in with the 'bot. The not knowing is nerve-racking.

My wife and I are quite frightened. A lot of the literature seems to be focused on "don't worry too much if you've caught it early." Well, we've caught this at an intermediate stage rather than early, so now what?

My sexual functioning is very important to me, but at this point I'm not sure I care what the doc cuts in order to try to stop this crap from getting into my bones.

Sorry for the long post, but we're in a bit of shock and any thoughts, advice, encouragement, or cold realities we need to prepare for would be appreciated. Any tips on how the heck you just keep functioning in your life with this thing looming would be helpful.

One specific question: does anyone where I can find survival statistics based on my stage of cancer AND my age range (say 40-49)?

Thanks in advance for your kindness.

rogermoore

sblome,

I guess I can safely assume from your reference to the "Brits" that you are among our friends across the pond?

I am a 6 1/2 yr survivior that was diagnosed at the age of 58. Although I was older, I had the same concerns about the sexual function you have. I did elect to have surgery, although it was the conventional RP back then, and regained complete sexual functionality with 4 - 6 weeks.

I think you have made a wise decision to have the Da-vinci procedure done, as it appears to be the "cadillac" of treatments available now. As you probably already know, surgery is not an option if radiation or chemo is chosen as the primary treatment.

My gleason was a 6 when I was diagnosed and the surgeon felt very good that the cancer had not spread. By now I feel his suspicions were correct.

Although I know you and your wife cannot help but be very concerned about the possibility of the cancer spreading, you both must remain very positive that it has not. Consider that the doctor's prediction was 50-60 % that it may have spread, that means 50-40% that it has not!!!!

Best of luck and keep us posted on your decisions/results. Feel free to e-mail me with any questions you think too personal to post.

Roger

sblome

rogermoore said:

sblome,

I guess I can safely assume from your reference to the "Brits" that you are among our friends across the pond?

I am a 6 1/2 yr survivior that was diagnosed at the age of 58. Although I was older, I had the same concerns about the sexual function you have. I did elect to have surgery, although it was the conventional RP back then, and regained complete sexual functionality with 4 - 6 weeks.

I think you have made a wise decision to have the Da-vinci procedure done, as it appears to be the "cadillac" of treatments available now. As you probably already know, surgery is not an option if radiation or chemo is chosen as the primary treatment.

My gleason was a 6 when I was diagnosed and the surgeon felt very good that the cancer had not spread. By now I feel his suspicions were correct.

Although I know you and your wife cannot help but be very concerned about the possibility of the cancer spreading, you both must remain very positive that it has not. Consider that the doctor's prediction was 50-60 % that it may have spread, that means 50-40% that it has not!!!!

Best of luck and keep us posted on your decisions/results. Feel free to e-mail me with any questions you think too personal to post.

Roger

Rodger, thanks very much for the encouragement. I've been impressed with the many kind people posting on this board to help others.

Actually, we live in the States, we just watch a lot of BBC America!

2ndBase

I was 52 and out of the blue had psa 0f 24 with gleason of 9. Surgery was not done as it was assumed to be out of the prostate. Had one shot of Lupron followed by 40 rad treatments. I was told I had a 50% chance to survive 2 years and it has been 4.5 since diagnosed. I believe the most important reason things have gone as well as they have was that I stopped worrying about making a living and concentrated on making a life. I got rid of nearly all stress, sure I had to file bankruptcy due to lack of insurance but I play golf 4 times a week and survive on one third the income I had. I am glad I did not have surgery as that would have been unnecessary for me. Survival statistics are hard to find and totally meaningless on a case by case basis so don not waste time or stress about it. I just live every day doing only what I want to do and have never been happier. Just get treated as you think best and make the best of it. Pay no attention to the negative things you hear and keep positive, do not stress and live life on your terms. It is possible, it may not be as glamorous. it may be different, but it will keep you alive a lot longer than always worrying about what will I do now?

sblome

2ndBase said:

I was 52 and out of the blue had psa 0f 24 with gleason of 9. Surgery was not done as it was assumed to be out of the prostate. Had one shot of Lupron followed by 40 rad treatments. I was told I had a 50% chance to survive 2 years and it has been 4.5 since diagnosed. I believe the most important reason things have gone as well as they have was that I stopped worrying about making a living and concentrated on making a life. I got rid of nearly all stress, sure I had to file bankruptcy due to lack of insurance but I play golf 4 times a week and survive on one third the income I had. I am glad I did not have surgery as that would have been unnecessary for me. Survival statistics are hard to find and totally meaningless on a case by case basis so don not waste time or stress about it. I just live every day doing only what I want to do and have never been happier. Just get treated as you think best and make the best of it. Pay no attention to the negative things you hear and keep positive, do not stress and live life on your terms. It is possible, it may not be as glamorous. it may be different, but it will keep you alive a lot longer than always worrying about what will I do now?

Hi Mark, thanks for your thoughts and advice. Your positive attitude is inspiring. Hopefully I'll get there when the shock wears off a bit. Best of luck to you!

rpoklahoma

Hello sblome,

Two years ago during a routine physical at age 40, I was diagnosed based on numbers very similar to yours. I went through conventional RP with nothing more troubling than a few bad memories of a nurse with poor bedside manors and interesting stories about the two weeks of catheterization after surgery. I too had the wait to see if the "crap" escaped the capsule. It didn't and my PSAs have remained undetectable. I have just recently considered myself a "survivor".

I noticed you mentioned you and your wife are quite frightened. Having someone to share this time in your life is very important and honestly a great blessing. You will each need to provide support for one another during the down times. Try to remember that she will have equally strong feelings about this as you. Give her some time and space to react as she will need to give you the same. Always keep in mind to use this to grow together and not apart.

At this time, you should be very careful of what you read online. To the detriment of my mental health, I began to self-diagnose every ache and pain obviously relating it back to PC. I should have just concentrated on the fact that there are many treatment options for PC and that you can't say that about many forms of cancer. So whatever stage you are at with PC, the numbers are typically to your advantage.

My tips for you to function during this time before surgery:
- Keep normal sleep patterns as possible even if it requires meds.
- Find and discuss with your wife the positives which will come from this. Suggestions:
--- More concentrated on your overall health.
--- Strengthens your relationship with each other.
--- Makes you think and commit to what is really important in life.
- Don't let the negatives consume you. Thinking about the worst is only normal, just don't let it dominate.
- Know that you are already on the path to recovery.

Your in my thoughts and prayers and please keep us updated on you success.

Photon

Hi

I am from across the pond and it is third world in terms of medical care and advanced procedures. I had Gleason 8s & 9s and a capsule extension. I voted for a conventional RP there is no Da Vinci in the UK. The Latter is a much advanced procedure and has much less morbidities - loss of sexual function, incontinence and general recovery.

I knew I was going to lose sexual function and have to bear incontinence for time but in the end it came out alright. I became continent and had a penile implant which works wonders.

If your choice is the surgery then you have should ensure you have a very experienced surgeon who does hundreds of the these procedures. After that take each hurdle, if there any, as it comes. There is always a fix. You will be fine and you can survive and live a full married life.

All my best wishes to you and your wife for the future

sblome

rpoklahoma said:

Hello sblome,

Two years ago during a routine physical at age 40, I was diagnosed based on numbers very similar to yours. I went through conventional RP with nothing more troubling than a few bad memories of a nurse with poor bedside manors and interesting stories about the two weeks of catheterization after surgery. I too had the wait to see if the "crap" escaped the capsule. It didn't and my PSAs have remained undetectable. I have just recently considered myself a "survivor".

I noticed you mentioned you and your wife are quite frightened. Having someone to share this time in your life is very important and honestly a great blessing. You will each need to provide support for one another during the down times. Try to remember that she will have equally strong feelings about this as you. Give her some time and space to react as she will need to give you the same. Always keep in mind to use this to grow together and not apart.

At this time, you should be very careful of what you read online. To the detriment of my mental health, I began to self-diagnose every ache and pain obviously relating it back to PC. I should have just concentrated on the fact that there are many treatment options for PC and that you can't say that about many forms of cancer. So whatever stage you are at with PC, the numbers are typically to your advantage.

My tips for you to function during this time before surgery:
- Keep normal sleep patterns as possible even if it requires meds.
- Find and discuss with your wife the positives which will come from this. Suggestions:
--- More concentrated on your overall health.
--- Strengthens your relationship with each other.
--- Makes you think and commit to what is really important in life.
- Don't let the negatives consume you. Thinking about the worst is only normal, just don't let it dominate.
- Know that you are already on the path to recovery.

Your in my thoughts and prayers and please keep us updated on you success.

Hi rpoklahoma:

Thanks for your thoughtful reply and advice. We are trying to adjust to the "new normal" and these posts have been very helpful.

Yours, sblome

sblome

Photon said:

Hi

I am from across the pond and it is third world in terms of medical care and advanced procedures. I had Gleason 8s & 9s and a capsule extension. I voted for a conventional RP there is no Da Vinci in the UK. The Latter is a much advanced procedure and has much less morbidities - loss of sexual function, incontinence and general recovery.

I knew I was going to lose sexual function and have to bear incontinence for time but in the end it came out alright. I became continent and had a penile implant which works wonders.

If your choice is the surgery then you have should ensure you have a very experienced surgeon who does hundreds of the these procedures. After that take each hurdle, if there any, as it comes. There is always a fix. You will be fine and you can survive and live a full married life.

All my best wishes to you and your wife for the future

Thanks Photon, these posts from people in a similar situation to mine have been very encouraging.

Thanks very much for taking the time to write!