Just Diagnosed

dmhenry2

I am 53 and have just been diagnosed with prostate cancer. I am scheduled to discuss treatment options next Thursday July 27th. I have researched treatment options quite extensivly. I am seeking advice to know if there are specific questions I should be sure to ask when discussing these options with my doctor next week. In other words, were there any questions you wish you had asked during your first follow-up visit after diagnosis?

Thanks,
David

rogermoore

David,

Welcome to the club no one wants to belong to. Seriously, I am glad you located this site and think you will find the participants very supportive.

If you have researched the treatment options you already know that if you elect surgery, there are several types or methods. Likewise, if you elect other treatments there are also variances.

First and foremost, be sure you are extremely confident in your surgeon, or physician. This is your only body and you MUST feel comfortable with your decisions.

Should you elect surgery, obviously the two primary possible side-effects are continence and potency. If you decide on surgery be sure your surgeon has a lot of experience and is relatively confident he can perform the procedure and spare the nerves. As for the continence, a lot of this will depend on your ability to train other muscles to assume the duties of the prostate gland, once it has been removed.

I'm sure you have noticed that I am concentrating on the surgical treatment option. Since that is the option I chose, that is the one I am more familiar with. I am sure you will hear from others that selected other types of treatments.

If you would like to ask any personal questions, but would prefer not to post them on this board, don't hesitate to e-mail me from my personal home page.

Best of luck and stay in touch,

Roger

RLR64

rogermoore said:

David,

Welcome to the club no one wants to belong to. Seriously, I am glad you located this site and think you will find the participants very supportive.

If you have researched the treatment options you already know that if you elect surgery, there are several types or methods. Likewise, if you elect other treatments there are also variances.

First and foremost, be sure you are extremely confident in your surgeon, or physician. This is your only body and you MUST feel comfortable with your decisions.

Should you elect surgery, obviously the two primary possible side-effects are continence and potency. If you decide on surgery be sure your surgeon has a lot of experience and is relatively confident he can perform the procedure and spare the nerves. As for the continence, a lot of this will depend on your ability to train other muscles to assume the duties of the prostate gland, once it has been removed.

I'm sure you have noticed that I am concentrating on the surgical treatment option. Since that is the option I chose, that is the one I am more familiar with. I am sure you will hear from others that selected other types of treatments.

If you would like to ask any personal questions, but would prefer not to post them on this board, don't hesitate to e-mail me from my personal home page.

Best of luck and stay in touch,

Roger

My husband (54) was diagnosed in March and underwent surgery June 7 using the da vinci robotic procedure. He was completely continent at 3 weeks and has had no erectile dysfuntion. From what I understand if you chose brachytherapy and it fails (meaning the cancer is not cured) you can not have external radiation because the radiation has a cummulative effect on the body...but if you have surgery and it fails (demonstrated by a rise in PSA) you can have what is called "salvage radiation" to attempt a second chance for a cure. I have also read that brachytherapy ONLY irradiates the inside of the prostate and a very slim margin around it so that if the cancer has penetrated the capsule there is a chance of missing part of the cancer. To my knowledge there is no way to be sure your cancer has NOT penetrated the capsule until you have surgery. Our Urologist/Oncologist said with my husband's age there were no other REAL choices...he said it needed to come out. He said he was too young to leave it in. We have been happy with the choice but do make sure you ask about the lymph nodes. Our doctor did NOT remove and test them and we just assumed they always did. We still do not know why and plan to ask next visit. We think maybe he just didn't think he needed to, but we would have felt better had he checked!

I have also read that unless you have the 3D IMRT (intensive radiation therapy)the chances are greater for ED and incontenince and also bowel problems (diarrhea, tenemus, etc). The IMRT reduces the risks to 2%...but still there is no back up with radiation. Just some things to think about. Hormones can give a patient more time but not cure the cancer..most save them for later treatment if necessary..and hope they are never necesary. I have read two very good books (available at Borders or Barnes and Noble) "Surviving Prostate Cancer" by Patrick Walsh, MD of John Hopkins and Prostate Book by Dr Peter Scardinos from Sloan-Kettering Cancer Center. They are worth your time in making such a large decision.

Sorry about your diagnosis but this is a good site to come to for information and I am glad you found it. God bless you and whatever you decide. I hope someday soon this is a distant memory and your PSA is 0!

jvancik

hi...I was diagnosed with PC at age 56...I had the radical retropubic prostectomy in 5/2004 ... I went for the surgery because I felt I had 2 chances at a cure ... one the surgery and two if there was a re-occurrence I still could go for radiation.... at the time I was told that with radiation as the first choice I would lose the chance for surgery or further radiation should the radiation fail... and I was told that if the surgery and/or radiation failed I was SOL ... there was no further chance for a cure ... as it turned out I feel I had excellent surgical care ... it has been 2 years since the surgery and I have never been incontinent and my sexual function returned after one year... I feel as though I was lucky because if I were to do it over again I would have chosen surgery but I would have asked the surgeon how many prostectomies he had done and what his rate of negative side effects was i.e. incontinence, erectile dysfunction and the return of the cancer .... so far I am very happy ... this disease as I understand it is a sleeper i.e. it is nothing until it gets out of control and then you are ultimately doomed to die a painful death ... so I would take whatever steps that you feel will acheive an intitial cure .... and I wish you the best .... Jerry

2ndBase

I was 52 when diagnosed with a psa of 23 and gleason score of 9. I was told to get my affairs in order and given a 50% chance to survie 2 years and a 2% chance to make 10 years. I waited a while and finally decided to take a shot of Lupron to help shrink the tumor followed by 40 radiation treatments, the maximum dosage allowed. No surgery because the urologist thought it useless as the cancer had about no chance of still being confined to the prostate. It is now 3.5 years later and I am enjoying life every day. I take vicodin 3 or four times a day and have been able to deal with the pain. I tried to go back to my job after treatment and was told I had been replaced thus losing income and insurance. With this situation I foung another job at minimum wage and after 5 months it became too painful to work and I applied for social security disability. I was denied twice but got a lawyer and had my hearing last week. My lawyer thinks I will get it and should know something in August. Having spent most of my retirement money it will be nice to have some income. I just do what I can and have a very understanding wife to support me. I do not worry and get a lot of rest which is needed as the cancer has metastisized to my bones. My psa has begun to rise and I will be starting more hormone treatment or chemo if I choose to do so. Every man has to live with his decision about treatment but accepting the side effects can be difficult for you and loved ones. Without support of your loved ones it could be too much to cope with but with their support life can be as good or better than ever. Avoid conflict and take try not to take yourself too seriously, laugh and stay involved with helping others. There are so many things worse than having cancer. Having cancer is not even in the top ten of problems I have dealt with before and since I was diagnosed. Whatever treatment you decide to use should be helpful and I wish you all the best.

kalar7856

Be sure and inquire about the long term effects of the treatment received. The Doc you talk to is selling a product and may neglect to stress the negative as will his staff.
Do your own research for factiods and questions. Obviously you already are! Good for you! At your young age everything I learned says surgery..
Best Wishes..

Peter51

David,

I'm sorry you have been diagnosed with prostate cancer. Keep in mind that life is not over for you but it will change. I am 52 and was diagnosed two weeks after my 50th birthday. I have three small children and was most concerned to be around for them as long as possible. My friends advised against surgery due to the risk of ED. I opted to go for longevity and decided that surgery was my best avenue to nip this problem in the butt. As a proof of my decision, I saw several specialists including a top radiation oncologist at Mass General Hospital. He ordered an MRI and reported back to me that he was convinced that the cancer had not spread from the prostate and thought I would be better off with the surgery and not pursue his treatment. I thought this very honest and felt more comfortable with the surgery. Next I wanted to get the best person for the job. The young doctor who diagnosed me was very bright but I wanted a doctor with a great deal of experience to cut me open. I chose Dr. Francis McGovern at Mass General. He was recommended to me by many and my own young doctor said he was one of the best. I had nerve sparing radical retropubic prostatectomy.

I was continent within weeks after the surgery and had erections within about six months. They are not great and I have a much smaller erection. I also have a slight case of Peyronies disease which is common after RP. The incidence is 1 in 100,000 for this disease but 3 in 64 of men after RP. My case is small but still not pleasant.

My advice is to see several specialists, not just surgeons but radiation specialists as well. Learn all you can about prostate cancer treatments. Only you can make the right decision for yourself.

Please email me if I can be of any help.

Peter Cassidy

lardog

Hi David
Sorry to hear of your diagnosis. I am also 52 almost 53 and was diagnosed in March 22.06.
you should ask you surgeon what he suggest and inquire as to how many surgeries he has personally done and also assisted in. Usually there are at least two surgeons.
Everyone has his recommendation for what they think is the best result but it is purely a personaly decision. Make sure you send enought time and do your research on the recommended procedures and talk to several of the Doctors patients if possible. I first went to a highly rated surgeon in my home town but after asking and doing my investigation I decided to go elsewere. I also spoke to several Doctors (4) and two of them were Urologist who knew I would not be a patient but called me as requested by a freind.
I had Robotic Prostratectomy on July 14 and my catheter was removed six days after surgery. I have been continent since the catheter was removed. Make sure you start your Kegel excersises now. Just moved to Dallas area and had my surgery at New York Presbyterian Hospital with Dr Ash Tewari who is one of the top two most respected surgeons for Robotics. I cannot say enought positive things about Dr Tewari and the Hospital.
The most important decision is for your is to decide what treatment fits you best. It is very personal. Then discuss with your Doctor and remember Doctors need to make car and house payments etc so they are sometimes biased in the choice.
If you want to contact me email me at invdall@sbcglobal.net and I will try to answer any additional questions and don't be afraid to put up additional questions and postings. I know there are a million questions in you head now.
Good Luck I know it is mentally draining.
Larry

shipjim

I was diagnosed in Jan. had Da Vinci in Feb and am 98% continent, just can't sneeze or eat many beans.
Impotentcy is still a problem, I take Viagra 3 times per week and use the Osbon Pump. No sex drive at this point but the rest of my life is great, play golf, just went fly fishing for a month. Worse than the prostate was achilles surgery 9wks ago. That hurt but its better. Good luck jj

shipjim

I was diagnosed in Jan. had Da Vinci in Feb and am 98% continent, just can't sneeze or eat many beans.
Impotentcy is still a problem, I take Viagra 3 times per week and use the Osbon Pump. No sex drive at this point but the rest of my life is great, play golf, just went fly fishing for a month. Worse than the prostate was achilles surgery 9wks ago. That hurt but its better. Good luck jj

bgospin

shipjim said:

I was diagnosed in Jan. had Da Vinci in Feb and am 98% continent, just can't sneeze or eat many beans.
Impotentcy is still a problem, I take Viagra 3 times per week and use the Osbon Pump. No sex drive at this point but the rest of my life is great, play golf, just went fly fishing for a month. Worse than the prostate was achilles surgery 9wks ago. That hurt but its better. Good luck jj

Please tell me about the Osbon pump; my doctor says that's what i need. Viagra gives me nothing but a headache! Thanx.

JJHopeful

RLR64 said:

My husband (54) was diagnosed in March and underwent surgery June 7 using the da vinci robotic procedure. He was completely continent at 3 weeks and has had no erectile dysfuntion. From what I understand if you chose brachytherapy and it fails (meaning the cancer is not cured) you can not have external radiation because the radiation has a cummulative effect on the body...but if you have surgery and it fails (demonstrated by a rise in PSA) you can have what is called "salvage radiation" to attempt a second chance for a cure. I have also read that brachytherapy ONLY irradiates the inside of the prostate and a very slim margin around it so that if the cancer has penetrated the capsule there is a chance of missing part of the cancer. To my knowledge there is no way to be sure your cancer has NOT penetrated the capsule until you have surgery. Our Urologist/Oncologist said with my husband's age there were no other REAL choices...he said it needed to come out. He said he was too young to leave it in. We have been happy with the choice but do make sure you ask about the lymph nodes. Our doctor did NOT remove and test them and we just assumed they always did. We still do not know why and plan to ask next visit. We think maybe he just didn't think he needed to, but we would have felt better had he checked!

I have also read that unless you have the 3D IMRT (intensive radiation therapy)the chances are greater for ED and incontenince and also bowel problems (diarrhea, tenemus, etc). The IMRT reduces the risks to 2%...but still there is no back up with radiation. Just some things to think about. Hormones can give a patient more time but not cure the cancer..most save them for later treatment if necessary..and hope they are never necesary. I have read two very good books (available at Borders or Barnes and Noble) "Surviving Prostate Cancer" by Patrick Walsh, MD of John Hopkins and Prostate Book by Dr Peter Scardinos from Sloan-Kettering Cancer Center. They are worth your time in making such a large decision.

Sorry about your diagnosis but this is a good site to come to for information and I am glad you found it. God bless you and whatever you decide. I hope someday soon this is a distant memory and your PSA is 0!

I am 56 and am considering retropubic surgery at Hopkins, surgeon would be Dr. Gonzalgo. Anyone experience surgery at Hopkins or with Gonzalgo and how are you doing? Thanks.