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PROSTATE CANCER SUPPORT SITE

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Steve S and Terry live in Montana, USA . He was 51 when he was diagnosed on June 22, 2007. His initial PSA was 12.6 ng/ml, his Gleason Score was 7 and he was staged T2c . He is undecided as to his treatment - here is his story:

I was diagnosed with prostate cancer in June of 2007. With a PSA of 12.6 ng/ml and a Gleason score of 9, and rated at a T2c. Second biopsy was 4+3=7 with 50% of core on right base and left base 3% of core with 3+3=7, did not take a PSA for 2nd biopsy, all other sample were negative.

I saw four doctors a surgeon a radiation therapist an oncologist and a cryotherapist. All four Doctors gave me recommendations, the first Doctor, the surgeon, suggested surgery with radiation, the second Doctor, the radiation therapist recommended seed implant therapy and IMRT. The third doctor recommended IMRT chemo therapy and hormone treatment. The fourth doctor recommended cryotherapy or HIFU, (High Intensity focused ultrasound). All 4 Doctors gave me 70-80% chance of being cancer free in 10 years, (I promised my wife that I would be with her until our 50th wedding anniversary with 18 years to go).

All the doctors were very kind and gentle and gave me as much time as I needed to answer all of the questions I had. The radiation therapist was extremely helpful with giving me a week or so to absorb everything and then called me at home about a week after our first appointment and spent roughly another hour on the phone to answer my questions and concerns and which time she recommended that I go to the Mayo Clinic in Minnesota. She was great, she set the appointment up, got me in touch with the Doctors at Mayo Clinic and made sure all of records got to the right people before my appointment. Wow what a blessing to do that off.

After the shock of the big C word and the crying and the lost feeling of hope, I finally got my life back in order got my hope back and realized I had to fight this thing to survive. My loving and caring wife and I started a strict vegetarian diet, (nothing processed), vitamins and minerals that were approved by the nutritionalist. 40 minuets of exercise daily and at least 64 ounces of water per day and also 3-6 cups of green tea daily. I figured that I need to remove the cancer but I also need to do something to help so that it does not come back.

Now comes the decision, of what to do with the cancer growing inside of me. Currently I am leaning towards laparoscopic surgery or the da Vinci. I will probably go with what the Doctors at the Mayo Clinic recommend since they are the experts, and should suggest the best possible treatment for me.

The appointment is for August 30, 2007 and I will update after the appointment.

UPDATED

September 2007

 

 

Our appointment at the Mayo clinic went very well. Talked with the Doctors and they recommended that I have surgery. Before we left town (Rochester, MN.) I made an appointment for the robotic laparoscopic surgery. That is set for October 26, 2007.

Later:

I had my appointment at the Mayo Clinic and that went very well. They re-evaluated my Gleason Score from a 9 to a 7, and my PSA had dropped from 12.6 ng/ml to 10.2 ng/ml. Talk about getting some good news for once.

The doctor I have chosen to do the robotic laparoscopic surgery at the end of October has done over 600 of the these procedures, so I do feel very confident in his ability to do an excellent surgery. I would have liked to have the surgery done right away but the Mayo Clinic was booked up until then.

Now comes the waiting game. Two months. Some days my thoughts go wild with apprehension and worry, I have never had ulcers but this could give me one, and others days it seems to be OK, more good than bad. If I did not have my faith to fall back onto I would be in a world of hurt.

After surgery I will update again. Good bye for now Steve.

 

UPDATED

November 2007

 

 

Well surgery went very well. I awoke to the urge of having to urinate extremely badly. My wife told me as I was drifting in and out, after surgery; all I could do was ask people to take me to the bathroom. My understanding, this was caused by the bladder spasms.

My pathology report came back good, all areas came back negative, and the cancer did exit the prostate on the left side and was into the nerve bundle they had to take part of the nerve bundle on the left side. The surgeon said that he was able to spare some of the nerve bundle on the left side which is good news.

Pain level was very low from surgery extra strength Tylenol took care of that. For bladder spasms a relaxer was used for that and a little bit stronger pain medication was used at night just to help me sleep a little longer. Sitting around for 12 days about drove me crazy. So I figured what the heck take something to help me sleep to pass some of the time.

A screw up between my two doctors - the surgeon that performed the surgery at the Mayo Clinic and the follow-up surgeon in Billings Montana caused me to carry the catheter for an extra two days a total of twelve days.

I am now 24 hours out from the catheter removal and my bladder control is coming back. Last night I awoke twice to go to the bathroom and this morning the diaper (big boys is what my brother in law calls them), were not very wet at all. Good news again. The big boys have been dry all day today. Will probably start wearing pads tomorrow. Started doing Kegel exercises about 2 months ago and maybe that has helped.

Started back at work half days today - work for 4 hours a day. Next week I am going to get back to 8 hours days the Lord willing. I do have a follow up check up, the 26th of Nov. Lord willing it will be all good news. I will up date again after that check up As always life's short so keep smiling Steve

 

UPDATED

December 2007

 

 

Well just had my 30 day check up, all seems to be well.

Some parts of my body are starting to wake up slowly. The pain is all but gone. Still feel a little different when I have a full bladder more of a pain then a pressure, just different. Holding a bowel movement or holding back gas causes a little pain but that gets better every day. That feels more like the pain when I had the prostate biopsies.The bladder control seems fine a little leakage now and than mostly when I pass gas but not very much at all. Have not worn pads or the big boy diapers for quite awhile now.

When I think back on all this, the worry at the beginning and the stress and the process of choosing the best procedure for me, I thank God that it is over and now I can get moving on with the healing.

For those of you just starting out, just remember that there is a light at the end of the tunnel and all is not hopeless. You will be around for a while longer so enjoy life and what God has given you in life. I will up-date again after my January 25 appointment.

Remember God is in control. Life is short so keep smiling.

 

UPDATED

February 2008

 

 

Best wishes to all. Had my 3 month PSA test on January 25 did not receive results until the 29th of February. Thank God it came back "0", that was what I was praying for. The week long wait for results about gave me a nervous breakdown.

Now for the last 3 months, wow what a roller coaster of emotions. When I am alone with my thoughts I question if the physical and emotional result of surgery was worth it. I have to answer yes to that but I still question it. I think back to when I was first diagnosed with prostate cancer and the depression and despair that I went into seems so far away now. I just hope that I could have words to say for the newly diagnosed men, I don't, so all I can do is give encouragement to the ones that e-mail me.

I am still doing great as far as leakage I do leak a little but it keeps getting less and less. As for erections, that part is still not working as well as i would like, I get a partial erection. They have me on Cialis 2 times per week and a V.E.D (Vacuum Erectoin Device). The V.E.D. is not very comfortable but if it will help keep the fibrosis away than I am willing to try it. They have tried me on Viagra and Levitra but Cialis seems to work better. I will update again after my six month psa check up.

I did find a V.E.D. device on eBay for $40.00, the doctor said that it would be about $300-$400, I thought I would try the $40.00 one first it seems to work fine, what ever fine is with that contraption.

My best wishes to all and remember life is short so keep smiling it gives people something to look at.

 

UPDATED

May 2008

 

 

I had my 6 month check up at the Mayo clinic April 25. My Psa was at 0. Praise the Lord.

I also had a falling out with my follow-up surgeon. He was not very happy with the fact that I went to the Mayo clinic for my surgery, and his care was not to the standard that I requested.

I requested that my 3 month PSA results be called into me as soon as they arrived I did explain to him about the anxiety that I was having over this first PSA test and if he could please call me as soon as the results were in.

I received no word from the follow-up doctor for 10 days with daily calls for results. I finally did receive the results in the mail.

If you have a Doctor you are not satisfied with do not be afraid to look elsewhere for a quality caring surgeon.

The last 6 months have been a wake up call for me. I have realized just how short my life with friends and family really is. I cherish the time I spend with my wife children and grandchildren and friends. What a blessing they are.

Until my 9 month PSA test God bless and remember to smile it gives your face something to do.

 

UPDATED

July 2008

 

 

My 9 month PSA test was at the Big O. That is what I was praying for and what the good Lord gave me.

When I am alone with my thoughts thinking about all that has happened in the last year that is when the depression creeps in, then I look to all that God has blessed me with a loving wife, grandchildren and 3 lovely daughters that love and respect me. With all that God has blessed me with, how can I stay depressed for very long? I think back to when all this started and all I wanted was 18 more years to make it to our 50th wedding anniversary, now I am just thankful for 1 more day to see the smiles on the faces of the people that mean so much to me, or hear the voices of the ones I care for so deeply.

Still hanging in there and smiling, this gives my face something to do besides frown.

 

UPDATED

November 2008

 

 

Well a year has come and gone since my prostate and I parted ways. Just got the results back from my yearly physical and my PSA was at 0 which is good news.

Life is coming back ever so slowly in the ED area. Sometimes I get discouraged and my wife also has issues now and again but she is very understanding and we keep the doors to communication open. Sometimes she feels that I do not care anymore for her or find her exciting when in reality it is my body that I am frustrated with and not her.

I do look at my wife, my children and my grandchildren and realize what a blessing they are how time is so much more precious I have read some reports that have really touched my heart and have brought tears to my eyes. I still go back and read everyone that gets posted. I usually wait until the end of the month and scroll through every posting that has had something posted to it for the month. It is very heart warming to see so many posting and to see that some men are having the same issues that I have which gives me some kind of hope to the fact that I am not alone in this and that I am not crazy for feeling this way.

So thanks to all that keep up the posting even after years after treatment. When I see a person that has survived after diagnosis, this relieves some tension and despair on my side and I can breathe a little bit easier.

So for the next six months before my next PSA test keep smiling people will wonder what you are up to and it always gives your face something to do

God Bless

 

UPDATED

April 2009

 

 

I had my 18 month PSA test and the results came back at 0. Praise the Lord. Life goes on my wife and children and grandchildren and friends are becoming more precious to me everyday. What blessing they are.

The ED issue that is slow to recover. I thought I was fine but trying for the last three months without the happy pill has been a little bit of a disappointment. So I called for a refill and back on the happy pill. It seems that I if I am the least bit tired the less chance of it working. Mornings it seems, is the best time for possibility of things working without the happy pill. I do make sure that I reduce my liquid intake before sex to reduce the chance of leakage during sex. I read a posting, which I do not remember who it was, but he referenced to getting excited and the leakage to being like a little puppy, which would get excited and pee all over the place.**1

I want to say a special thank you to all that keep up their posting you have no idea how much it has helped me.

My next test will be at my two year mark in Oct 2009. So for now I am off to enjoy the summer. So for the next 6 months keep posting and keep well.

Remember to smile people will wonder what you are up to.

Steve .

Steve's e-mail address is: ssnufffy@peoplepc.com

Note 1: What Steve is referring to here is the leakage of urine that can occur when climaxing after surgery. It is rarely reported or discussed, but some commentators belive that it is widespread - and may even be almost universal. [back]