I had physical exam on reaching age 65. my PSA came back 20.2 ng/ml. I gulped and asked what next? I was sent to urologist.
DRE (Digital Rectal Examination) was not good. I had a biopsy all cores positive from 20% to 80%. The urologist was vague about grade and staging but finally said T3N1M0.
I had CAT and bone scan - all negative. I was referred to a radiation oncologist. He wants to do radiation with two years Lupron. I am very interested in my short term quality of life. I am very sensitive to medication and would like to do just the radiation.
I am scheduled for January third and would really like some feed back on this. I am being treated for long term depression and the side effects of Lupron for two years sound like pouring gas on a fire. I also have COPD (Chronic obstructive pulmonary disease). I've seen the test results on combined therapy and it seems that five year PSA rise is much better with both, but if I'm a wreck mentally and physically and the treatment fails any way I still have to do Lupron. I would sure like all the feed back I can get.
I live in Abilene, Texas. After much study and input from Yana and other sources I have decided that the only course is combined hormone and radiation. My oncologist is going to start Lupron today, January 7 '07. I will take Lupron for six weeks then start 30 radiation treatments. He wants to continue the Lupron for two years. I still have many fears and reservations about Lupron.
Thanks for all the input. Yana has been a godsend. I hope I'll be able to report minimal side effects, but never the less I need to get a positive attitude about this.
I will keep this updated when I know more.
Thanks Jack Carden.
After 28 radiation wide range and 14 involved-node radiotherapy (INRT) to prostate plus 6 months Lupron I have decided to stop the Lupron at 6 months. The side effects of both treatments were pretty hard but bearable.
I took my last Lupron in April. PSA at that time was <.01 I'm fully aware that that PSA doesn't mean very much when taking both treatments. I'm actually unsure when Ill really be able to trust the PSA.
My next appointment with oncologist is in December. Unlike many of you I've not been able to put together a crack team of caring doctors. My radiation oncologist is my primary doctor. At this point there is no use to see my urologist [who I consider not very interested any way]. My reason for quitting the ADT (Androgen Deprivation Therapy) are the side effects. Although not unbearable they are bad enough that I don't want to take them again until I have to. The hot flushes at night are the main reason, I have 3 or 4 each night and haven't had a good nights sleep in months. My body can't adjust to any heat or cold, I'm either to hot or cold.
My mental state, although not debilitating is bad enough. I have lost my drive to work or really to do much at all. I've also read the studies on the benefit of short term ADT with radiation and am willing to take the chance on having several years of treatment free life. Because of other health problems [Chronic obstructive pulmonary disease (COPD) and some heart valve problems] I would rather have a few good years now and be sick later. None of my other health problems are serious now but will get worse with time.
I can't tell you how much I appreciate Yana and all the help it has given me since diagnosed in October '07.
Thanks Terry for all you do.
Jack Carden Abilene Texas
I got some great news today. I had my PSA done and it came back 0.01. I had my last 3 month Lupron shot in April, it should have lasted through July. Radiation ended in April also. I really don't know how to analyse this, I thought that with the Lupron gone my numbers would be higher with only the radiation working. I don't know if this should be my nadir of if my PSA will start slowly rising. All I know that this can't be bad.
I will see my radiation oncologist on Dec 4 and will know more then. I hope that the 6 months Lupron was a wise choice. I know that I don't want to take it again until I absolutely have to. Its been over 6 months and I'm still having a few hot flashes. I've gotten my energy back now if I can lose the 20 pounds I've put on every thing will be back to normal.
Thanks to all of you for the input. I wish good numbers to you all.
Later: Just talked to my rad. onc. He made a mistake or I heard him wrong. My PSA is 1.0 not .01 - still good but not as good as .01 We'll see.
Jack Carden Abilene Texas.
Hello Terry and all.
I just got my one year post treatment - PSA 0.01 I was very happy because after reading my previous entry I realized that my numbers on diagnosis were worse than I said.
My pre-treatment PSA was 20.2. then I had another before starting any treatment which was 12. I don't know which one is correct. The worst numbers were 12 of 12 cores positive to 80%. After reading the pathology report I discovered that there were two small areas of 4 in my biopsy. My urologist told me 6 but its was really 7. [This illustrates why it is important to obtain copies of all reports to see what they say, rather than what the doctor says - see Surviving Prostate Cancer] It's been one year since treatment over, 42 rad, and 6 months Lupron. Most of my symptoms have gone away. Very few trips to john and very little radiation side effects. I don't expect a full cure but I hope I've bought myself some time without Lupron. I'm happy so far with my decision. The Lupron was more toxic to me on every level. I really don't want to take it again until necessary. I'm going to be cancer free for another 6 months yea!
Thanks for Yana
Hello fellow travellers!
It's been 18 months since end of treatment radiation and ADT. My PSA is unchanged. These damn doctors don't keep up with this disease at all. My doctor is a radiation oncologist and although he's good at radiation he's fuzzy on details. Six months ago he told me my PSA was 0.01, I looked at the paper work and it said 0.10. I really don't think he knows there is a difference in 0.01 and 0.10.
In any case my PSA has not changed in18 months and that makes me very happy. I don't have to have cancer for 6 months Yea. With my bad numbers I really thought it would be higher. I feel great and hopefully will be cancer free for a while. This is what I had hoped for when I chose short term ADT and radiation.
Thanks Terry for all that you do.
Jack Carden Abilene Texas
My PSA two years after treatment stopped is 0.10 - this is unchanged for over 2 years.
Yea. this is what I hoped for when I chose 6 months Lupron and radiation. With my bad numbers this means 6 more months cancer free. I was diagnosed September, 07 so I guess I'm almost a three year survivor.
Hello Terry and everyone.
I just had my six month PSA and it was 0.20. This makes three years since diagnosis and over two and a half since treatment ended. My PSA has been a steady 0.10 for two years and the slight rise to 0.20 is basically unchanged. I will watch it but I think this was just the test. I still have a prostate so it would have to go up a lot more to scare me.
I have very little damage from the radiation. I'm happy with the results so far. Thanks Terry for all you do.
Jack Carden Abilene Texas.
Hello fellow travelers.
My PSA nadir was .1 and stayed that way for 2 yrs. It has been between .14 and .2 for the last 2 yrs. The last 2 test have been .14 and .2.
My doctor thinks I'm cured I don't agree. I will keep testing as long as they will pay for it. If I do have a failure I will not do Lupron again. I will do the estradiol patches. My Doc thinks I'm crazy. He is an excellent radiation oncologist but really doesn't know much about prostate cancer treatment.
As far as side effects from the radiation I really don't have any. It did cause some change in rectum but they were an improvement on what I had. I really didn't think I would go this long without failure. I'll be 70 in Sept. which sure sounds old to me but I have 80 yr. old friends that tell me I'm really young. I think I was really lucky to get an excellent radiation team in little ol Abilene Texas. to have very few side effects 4 yrs after treatment is better than most guys. I would be glad to answer any questions. My phone is 325 514 5808
I can't thank Terry enough for this site it has been the most help of all. Hang in there Guys.
In response to a reminder, Jack wrote:
My next PSA is in June. It has been slowly rising. I will update in July.
Thanks Jack Carden
Hello Terry and fellow travelers. My original dx in 2007 was PSA 21.1 Gleason 7 (3+4), with all 12 cores positive up to 80%. I chose radiation and ADT for 6 months. I had many side effects from the Lupron. It's been 5 yrs since treatment ended. My PSA was .1 for several yrs. 3 yrs. ago it went to .2 then to .26 last yr. I put the last PSA; off for a yr. I thought I was on the brink of failure, with 3 rises in a row. In may my PSA; was .26 unchanged for a yr. My original treatment I hoped would buy me a few years without further treatment. It seems that I've bought myself more time than I thought. My Doctor thinks I'm cured, but we know better. This damn disease is persistent. I hope that I'm cured but will test yearly now. I've had a lot of good health news lately. I was dx with macular degeneration last year. After a series of shots in my eyeball I seem to have regained nearly all of my eyesight. I'm very glad that I didn't do Lupron for 2 yrs as my doctor had recommended, I think it would have killed me. Many studies have since shown that short term ADT is effective. I'm very grateful for Terry and YANA. My dx stats were pretty bad and my interaction with the men on YANA was invaluable. I'll be 71 in September and don't have to worry about pc for a few years. That is much better an outcome than I could have hoped for. I'll update yearly. Thanks Terry for all you have done.
Hello all! I was dx in Sept. 07. Started radiation and Lupron in Feb. 08. The Lupron was more than I could take so I quit after 6 months. As you can see in my story I had all 12 cores positive. Mostly 3 but several at 4 after eight months my PSA was around 1 and stayed there until 2015 when it went to 4.5 scared hell out of me. We started taking it every 3 months. It went down to 1. after 6 months. Doc thinks I had an infection. PSA remains around 1. When I started this deal I wanted to buy myself 3 years so after 8 I'm happy with my choice. My doc. wanted me to stay on Lupron for 2 years, if I had done that it would have killed me. For people with stats close to mine 6 months seem to be enough. When I started this deal I was 65, I'm now 74. I wish I had known I would live this long, it would have saved me ton of stress. At this point in my life if the cancer comes back I'm pretty sure I would not treat it, Lupron is too tough. I'm glad to be alive and can't thank Terry and YANA enough. The first 5 years I lived on this site. I should have updated every year but had other problems. Please feel free to call me (325) 514-5808 if I can help. Thanks again.
Jack's e-mail address is: firstname.lastname@example.org