What now?

mander

Hi. It is my first time on here. My husband (now 55) was diagnosed about 3.5 years ago with prostate cancer. His PSA was 25, and his Gleason was 8 (4+4). I always get mixed up on his stage, but it was in his seminal vesicles, but bone scan and other tests were clear.

He had IMRT radiation, and was on hormone therapy for 2 years following. His PSA went down to .1. It has stayed there until August, when it went up to 1.2. The increase started less than a year after he went off the hormone therapy. His last PSA test (a few weeks ago) was still 1.2.

I guess I am wondering if anyone has experience with what to expect now. His way of dealing with this is to say very little about it to me, and pretend everything is going to be okay. I just need to know what to expect for my own sanity. Docots won't really talk to me because of confidentiality, so I am left to guess on my own. I am also dealing with my mom who has breast cancer, and 2 teenagers, and would really like to have some idea how fast this disease usually progresses at this point.

He has been having pain in one spot in the middle of his back for a few months now (off to one side), and his latest amylase test was elevated (suggesting an inflammation of the pancreas?). I am wondering if any of this might be connected to the prostate cancer.

Thank you so much for any help you might offer.

2ndBase

I am now 54 and had psa of 24 and Gleason of 9. I was told to have a 2% chance to survive 10 years about 3 years ago and now have no job or insurance and just filed bankruptcy. Other than that life is good!! The doctors dont tell me much and I really do not ask too many questions. I was told the end would be a rough way to go when it comes but I really dont dwell and it and just try to enjoy the time I have. Worry will only make things worse and Im sure your husband trys to spare you from it as he should. I may take more treatment if I get insurance again someday but for now its not feasible to come up with the money and I feel like I can wait another year and be no worse off. By then I may be more able to get insurance or medicaid. Seems to me your husband knows what he is doing and is ok with the way things are. Best Wishes.

Benji48

Hi,
I think you & your husband need something more than "doom & gloom". I would ask, Why did he cease taking the homone treatment? Was it because the "average" time is 2 years? Or was there evidence of refractory which is not seen from your post?
Anyhow, prostate cancer is typically not a very rapid grouth situation AND from the prelim data of psa 25 plus gleason 8, most likely had escaped the capsule even though the bone scan was clear(not a very sensitive test at that point)
The posibility of Pancreatic is another matter, but I don't think they (prostate metastates) are related.
I would investigate the reason for stopping the hormones if I were you & determine if restarting is viable.
Good Luck, Benji

stuart

Pretending everything will be ok is not ok...I can understand your husbands reluctance to get back on hormone therapy...I was on for two years and it's not very pleasant...I was off meds for two years but recently my PSA began to rise...My doc wanted me to go back on Zolodex but I opted for Casodex which has less side effects and can be effective for a few years...It's an option your husband might at least give a try...

mander

stuart said:

Pretending everything will be ok is not ok...I can understand your husbands reluctance to get back on hormone therapy...I was on for two years and it's not very pleasant...I was off meds for two years but recently my PSA began to rise...My doc wanted me to go back on Zolodex but I opted for Casodex which has less side effects and can be effective for a few years...It's an option your husband might at least give a try...

Hello everybody, and thank you so much for your responses.

My husband stopped the hormone therapy because the doctor told him to....that usually 2 years following radiation is the norm and then see what happens...what happened is that his PSA started going up after about 9 months off...the doctor still does not want him back on it...?

I really don't want gloom and doom, but it is very hard being kept in the dark about things...it makes your imagination run wild. I figure he has enough to deal with coping with his illness (which he does very well) so I don't want to ask him specific questions....but I am at the point now where I want some more information about what I can expect as his wife....especially with 2 kids to support.

Thank you so much for your help and kind words...

stuart

I'm not sure why his doctor is reluctant to put him back on medication...If his PSA increases three consecutive times, this is usually called chemical failure...It happened to me and I am back on medication which so far has reduced my PSA... It may be worth getting a second opinion...

Benji48

mander said:

Hello everybody, and thank you so much for your responses.

My husband stopped the hormone therapy because the doctor told him to....that usually 2 years following radiation is the norm and then see what happens...what happened is that his PSA started going up after about 9 months off...the doctor still does not want him back on it...?

I really don't want gloom and doom, but it is very hard being kept in the dark about things...it makes your imagination run wild. I figure he has enough to deal with coping with his illness (which he does very well) so I don't want to ask him specific questions....but I am at the point now where I want some more information about what I can expect as his wife....especially with 2 kids to support.

Thank you so much for your help and kind words...

Hi Mander,
I hope you didn't misinterpret my "doom & gloom" statement! I merely meant to caution you about some souls that post to this forum which promote that sort of thing.As I've said B4, this is NOT an immediate death sentence! I agree with Stuart, encourge him to restart some sort of hormone treatment.
When ever I interfaced with the doctor, my wife was at my side in his office so I would encourage that. She also accompanies me to the support group meetings. If he won't answer your questions, or if you are afraid to ask him, encourage him to attend a support group meeting in your area and ask your questions there! After all you are both in this together.
Good Luck, Benji

TomBk

2ndBase said:

I am now 54 and had psa of 24 and Gleason of 9. I was told to have a 2% chance to survive 10 years about 3 years ago and now have no job or insurance and just filed bankruptcy. Other than that life is good!! The doctors dont tell me much and I really do not ask too many questions. I was told the end would be a rough way to go when it comes but I really dont dwell and it and just try to enjoy the time I have. Worry will only make things worse and Im sure your husband trys to spare you from it as he should. I may take more treatment if I get insurance again someday but for now its not feasible to come up with the money and I feel like I can wait another year and be no worse off. By then I may be more able to get insurance or medicaid. Seems to me your husband knows what he is doing and is ok with the way things are. Best Wishes.

Mark,
I have to say this: I admire you for your courage. You are an example to us all. thank you sir.

KMiyoko

Hi,
I am a wife of a husband who had surgery for prostate cancer this past August. My husband was not one to talk about things either. Then again he was not very informed medically about all of the options that was available to him, as far as treatments. I did a LOT of research and he had the Da Vinci Robotic surgery. He was 43 when he had the surgery. We had 2 doctors opinion, both suggested surgery because of his age and test scores. His scores was 6.55 for his PSA, and his gleason was 3+3(6). Now his PSA has been undetectable after the surgery. I just went with him to his doctors appointments, then that way I knew what was going on and I could also ask questions. My husband did not want to talk about stuff, but was okay with me going to the appointments with him. He also told the doctors that I could talk to everyone and anyone about his condition. For insurance purposes he had to sign papers giving me permission to talk to people. Maybe your husband would let you go with him to his appointments. It's worth a try, maybe he is not comfortable telling you things himself.
Good Luck, Kay