THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.

First told by Primary care doctor to see urologist, I was scared but felt it could not happen to me. So I went to see the clinic and was given a biopsy, I came back in a week and was told the bio showed cancer in all points tested and was given a Gleason of 9 and a staging number that escapes me at the moment. The doctor seemed very sad and showed me a small booklet open to the page with my Gleason number and staging. I left that day with my head in the clouds feeling that this could not be, a good thing my wife drove. When we got home it hit me that I was going to die and I would not see my granddaughter who was 3 at the time, grow up, and I proceed to cry.

The doctor wanted to go after the cancer aggressively and recommended a 3 prong approach 1. seeds implanted 2. external beam and 3. hormone treatments. During this time I had owned a small business and my partner I knew had been planning to move out of state, but I did not know when. Well I went into work the next day after receiving the news that I had cancer I found that my partner had cleaned out all his stuff and had been copying all of my customer's records and addresses and my business was going to be in for real trouble. Well I about had a nervous breakdown at the end of that day and had to see my primary doctor while crying my eyes out, I was out of control so I closed my office and took a few days off, then went back to work and started treatment. The treatments did have some side effects (not sure which one was worse) but by the end after months and months my PSA was down to a 3.5 and we even stopped the hormone treatments. I was going along trying to save my business that was failing and watched my bank account shrinking when after a blood test showed my PSA was at 6 and the doctor wanted to see me right away. My sister who is a RN had wanted me to go to the large cancer center in our area called Roswell Park cancer inst.

I made an appointment with urology and was seen by one of their doctors, he explained all my options to me but decided to do another biopsy (I never get anything for pain boy do those things hurt) and told me it was bad and wanted me to decide what to do. He did not rule out surgery, but felt very little chance for success just like the first Dr. We went with Lupron depot and the PSA's were stable and slightly lower. I was given routine bone scans over the next year and so. But one day they found a tumor or 2 on my ribs and the urologist referred me to an oncologist in the cancer center. We stayed with the hormone treatments and he offered me a chance at a drug trial. I decided to go along and try it. Well after about 8 months with some really nasty side effects we found after a bone scan that my tumors were growing. so the doctor recommended chemo therapy, I agreed and 2 days later I had my first treatment. I wasn't even over my side effects from the trial drug that I was getting sick with Dextrol. In the time that had passed I had lost my business, and could not find a job in my field, well most of the Optician's in the area knew I had cancer and I never could prove it but whenever I felt after an interview I was in suddenly I did not get the job. So I found I could get paid to learn to drive a school bus and got my commercial drivers license, when a job at a VA came open for an Optician and the government cannot discriminate and I was hired. It was great because they had really good health insurance (even though I had to pay a lot of it) and the pay was not a lot but better than bus driving and all our savings were gone and most of my 401.

I kept working through my chemo and the people at the VA were great letting me off many times when I would be very sick after a treatment, they even donated some sick leave because mine was running out. During the chemo my hands were getting more numb and the doctor told me they may not get better if I kept the chemo up, but we decided to take one more treatment. After the doctor called it off, he said I was too sick. Well by this time I think I had forgotten what it was like to feel good. Also my PSA had risen to around 55 and we were running out of options then we decided to try a new drug called Zytiga. I started on the 4 pills a day (this stuff comes at a high price of about $7500) and the Prednisone that has to be taken with it. The treatments have been great the side effects are lower than I have had in a while and my PSA is been down to below 1 the lowest since I started with all this and my doctor has commented on my last visit that I am doing better on this drug than anyone else.

So I guess this brings me to even why I am on this website, I was researching what it is like to die with this cancer, with tumors on my femur, hip, ribs, spine and elsewhere. I think about death but my working makes me think that it won't happen just like I would not have cancer like in the beginning. I have wanted to keep working but I am getting weak and so very tired that my wife and I am trying to sell our house (so far no luck) because I can't take care of it well and we need the money. My daughter in Florida said we could live with her until I can get disability payments and my wife can find work and maybe we could find a little place to live. I just can't stand the cold up North anymore. I do not want to die, I was searching what it will maybe like. I am always thinking about it, I once a while back when I was just starting down this road with cancer I went to a prostate cancer group meeting to see what it would be like and find out how others were dealing. All of the men there were not worrying about death but about how good their erections were and how their doctors should have told them about the side effects. I would rather live I thought, but like everyone tells me we will die, I reply I know how and about when.

So I guess it's hard to sum up just how I feel after 6 years of cancer and it's treatment I always wonder how others feel.

[There is a page on the site The Elephant In The Room which deals with some of the issues in attempting to answer the questions "When will I die? How will I die?]

Jim's e-mail address is: james.hoffman AT va.gov (replace "AT" with "@")

NOTE: Jim has not updated his story for more than 15 months, so you may not receive any response from him.