Hello to all. I am new here, so any tips are welcome. It is hard to find ones that have survived PC this long, that can tell you how it was done. I welcome input from anyone.

I was diagnosed with PC 1990, with RP in June of 90 My Gleason score in 1990 was listed as 2+3=5 with extensive perineural invasion. Also listed as stage C, T3.

I was tracked by a oncologist for 10 years with PSA still undetectable. In the 12th year my PSA test was 0.10, PSA gradually elevated until at the 15th year (2005) check it was 0.60. I checked back with my surgeon, who sent me back to my oncologist. At this time I was told I should have salvage radiation treatment.

42 salvage radiation treatments on trilogy machine at OSF St. Francis Medical Center October 19, 2005 to December 13, 2005. PSA dropped to 0.10 after treatment, but now is up to a 2.9 as checked November 8, 2011.

I went to see my oncologist Wednesday November 15, 2011 and he wanted me to continue to wait and watch. I have also been advised that maybe I should be on a hormone therapy.

I have decided to look for a second opinion from another oncologist some place else. I am looking for information on what course of treatment I should be looking for. As of last year, no metastasis could be found. I am a 78 year old, and except for the PC, I feel that I am in very good health.

Thanks for any suggestions anyone medical, or personal experience has to offer.

Jack

My last PSA was 2.9 and my oncologist wanted me to continue to wait and watch, which I am doing.

I will see my Oncologist in May, and depending on what my PSA is doing, we will make another decision for the next 6 months.

I am still feeling good, with no sign that it has spread to any skeletal part of my body, or any sign in any soft tissue.

Jack

I visited my medical oncologist on May 16, and it was decided to wait and watch for another 6 months. In the last 6 months my PSA had increased from 2.9 up to 3.4.

In November I will have a PSA, CT scan, and a Full Body Bond Scan, prior to my visit with my oncologist.

It will be decided then, based on the results of the PSA, Bone scan, and CT scan as to what will be my future treatment, if any. If my PSA is not accelerated in rate of increase, and nothing show up on the 2 scans, I may opt for continued waiting and watching.

I still feel great at 78, and will be 79 before my Nov. doctor's visit.

Hope this information will help someone in the future to set their own treatment.

Prayers to all fighting this ailment.

Jack

Since my last update in May 2012 I am still doing well as far as I know.

Prior to my visit to my oncologist in Nov, of 2012, I had a full body bone scans, plus CT scans, and PSA test.

Nothing outstanding show up on the CT, or bone scans. No sign of the PC setting up anywhere that they could find.

My PSA had risen from 3.4 to 4.2 in the previous 6 months.

I discussed all the information from the CT, bone scan, and new PSA with my dr. and we both chose to continue to wait and monitor the PSA.

Later I got notified that my oncologist was retiring and was assigned a new dr. which I will see in Nov. of this year.

I will probably not get a new PSA until just prior to my Nov. appointment.

Still open for any new ideas, or information that may be helpful to me or anyone in a similar condition and history.

Prayers to all with a PC involvement. Jack Drum.

I think my last entry dated of June 2013 was really Nov. 2012. I didn't see my oncologist since Nov. 2012.

This Nov. 20 2013, yesterday, was my first visit with this new doc. and one of his first comments was that he didn't get to visit with many people like me, meaning a 23 year survivor of PC.

My PSA this had dropped from 4.2 in 2012 back to 3.62 this year. I was concerned that a error may have been made.

My first question for him was "do you think they made a mistake on my PSA test this year" as my number dropped from 4.2 last year to 3.6 this year. He had checked my PSA readings over the last several years, and it had been a gradual climb until this year when it dropped. He said that mistakes in PSA was very uncommon, but felt that last years extra high jump was a mistake.

All my other blood work checked out very good, and considering that I am still in very good physical health, with no major problems of any type.

He said by the time I reach 130 we may have to start on some treatment.

Thought that this post may offer some members the hope that this PC can be lived with for a long time.

Quick rundown. PC in 1990 at age 56, with RP at that time. Salvage radiation in 2005, and nothing since then except watching and checking PSA each 6 months, and visit with oncologist now each year.

Now a happy 80 year old, active in most things except sex intercourse . I've had ED since my RP.

Wishing you all a long life and beating this terrible ailment.

Best wishes and prayers. Jack

I had my PSA taken on 11-17-14, and saw my oncologist on 11-19-14. This oncologist took over from my prior oncologist 2 years ago, and not sure if I will remain with this doctor.

My PSA had jumped from 3.6 in Nov. 2013 to more than double to 7.8 this year.

My doctor wants me to wait for 6 months and recheck the PSA and then if it has continue to rise, to have all the bone scans, CT scans and see if they can find any place where the cancer has set up and they can locate it.

I am considering talking to him again soon and ask for the bone scans and other test appropriate. If he does not go along with me, I will probably go to a different doctor.

I still can't pinpoint any irregularities in my body that would indicate anything going on.

I will update this site as I find out anything.

In June of this year 2015, I could feel things wrong in my body, so I got necular bone scan and ct scans done. This showed my PC was spreading and was in the prostate bed, one rib on the left side and maybe in bladder.

My PSA was checked and it was 10.33

My oncologist had me see a urologist and get a cystoscopy done. On this PC was found in the Urethra just as it left the bladder. He thought he got all the cancer, but I have had another cystco, and still having problems getting my bladder control back.

Next visit to oncologist, he put me on Lupron, and in 6 weeks my PSA has dropped to 4.42.

I will see oncologist again next month. Hopefully my PSA will be very low by then.

The Lupron has changed my lifestyle a lot, but if it stops the growth of the PC, it will be worth it.

I will update after the next visit.

I was waiting for of my recent CT, and Nuclear Full Body Bone Scans before I updated.

My scans was completed on 9/24 and I got the results by phone from my Oncologist nurse this past week, and the results was told to me as "VERY GOOD, AND POSSIBLY SHOWING SOME IMPROVEMENT FROM THE SCANS I HAD 17 MONTHS AGO.

I have not been on any treatment since Dec. of last year, and my PSA did increase from 0.15 to 0.3 during this time.

My Oncologist said he would start the Lupron treatment again when the PSA reaches 0.6. I am grateful of the rest from the Lupron, but some of my side effects still remain.

I still thank the Good Lord for the 27 years I have survived this PC, since my RP done on June 26, 1990.

My biggest problem is the loss of energy, retention of fluid, and other side effects from the Lupron.

I will start physical therapy for my legs and hips starting next week. I still walk some, but nothing compared to what I did prior to the spread of my PC about 18 months ago and the start of Lupron.

I hope all the many people reading this can know that a reasonable life style can be maintained for a long time with this PC as I have done. I pray that this information helps all of you that reads this.

I will try to update this more often, and wish you all the best.

Jack Drum

Since my last post a year ago, I have switched my Oncologist from a Dr Veeder to a younger Dr. MacVicar.

Dr. Gary Robert MacVicar, Peoria, Illinois. working at Illinois Cancer Center has a good background in PC cancer and is the reason I have changed to him.

Last visit was 11/2/17 with Dr. MacVicar we discused going back on Lupron. He left the choice up to me, but his idea was to wait and watch for another 3 months.

I am still in fairly good health for a 84 year old who has had PC for 27 years.

I have done nothing but standard things that my doctors have suggested or ordered.

RP in 1990, 43 radiation treatments in 2005, and lupron for 2 treatments in 2015, and watching and PSA every 3 months.

I hope this information is a benefit to others.

If anyone knows of someone who has lived longer than 27 years with PC, please let me know.

Thanks and God be with you all.

Jack Drum

I have been off lupron for about 1 1/2 years, but my PSA took a larger jump in the last quarter, and my bone scan I just took shows involvement in my ribs where it was before.

I should go back on some treatment. I see my oncologist tomorrow and I will soon post what the outcome is.

Thanks to you for providing this forum for information.

Jack Drum

2 weeks ago I had the nuclear bone scans, and CT scans to find out where my cancer spread to again.

It is in my right arm, upper bone, just before the shoulder joint, some ribs on the right side. and also they found something in the upper lobe of one of my lungs. Not sure what that is yet.

I havn't been on any chemo for some time, but am on Casodex as of 3 days ago. I will go on lupron Feb 6 and on Apalutamide as soon as I can get it approved by the VA said they will get it for me.

I will update my condition again after I have been on the new meds for a while.

Just wondering if any of you know what the cost of Aplalutamide is in your location. In the US it is very expensive.

Thanks to you all, and prayers for you all to do better.

I saw my oncologist 2/6/20 and went on my full Hormone or chemo therapy. I am now taking CASODEX,

Got a LUPRON SHOT, and Started the ERLEADA. This is a newer, very expensive med in the US. 12,200.00 for month. My insurance covers most of it.

I will update when I have been on this for a while.

Jack

Jack's e-mail address is: jackdrum1 AT gmail.com (replace "AT" with "@")