Irv just went to get his catheter out today..That was good. He'll be getting the rest of his staples out tomorrow and that's good too.
We got the pathology report. His Gleason score is still 3+4 and the lymph nodes were clear but the seminal vesicles contained cancer.
The doctor gave Irv a 30% chance of cure. Suddenly I feel much older than my years. I'm only 49 and could lose my partner in only 15 years. It might seem like a long time, but, really, it isn't and the thought of the possibility of facing my retirement years without him is so difficult for me. Besides that, I feel so sad for him that his body isn't working for him the way it was before surgery.
The one thing this monster has done for me is make my love so much stronger for him.
I'm hoping for some positive words. Is there anything I don't know yet which will give me more hope?
Irv will get his PSA tested again before his follow-up appointment in early January. If it's anything but zero, then radiation will be scheduled right away. If it's zero, then we decide whether we should wait or not to at least give his nerves a chance to heal. Irv's nerves were spared on the left and grafted on the right. I'm wondering if, perhaps, the graft was for naught and has given him a lifetime of numbness along part of his thigh for nothing.
I don't want to feel like this. When I cry, it upsets Irv. I try to let it out when he isn't around but I'm feeling more and more out of control of my tears this evening, as the reality of the day and this new information sets in.
Looking forward to the support...G-d knows, I need it.
Sorry about the seminal invasion but all your news wasn't bad. The road can be a bit up and down. However 15 years is a long time for something to come along that may improve or outright cure the situation. Keep on keeping on. I will say a prayer for you both.
Last edited by hb-mod; 11-22-2010 at 10:40 PM.
Reason: Removed Quote. Please use "QUICK reply" rather than "QUOTE reply". Thanks!
I've been following your and Irv's progress with sympathy. Having just gone through surgery for Gleason9 PCa, I know what an emotional roller coaster this can be for husband and wife. But even though my doc only gives me a 50% chance of cure, which really bummed me out a month ago, now I've learned to live with it -- most of the time. Humans, it seems, strive to adjust to setbacks and find reasons for hope.
Plus, your doctor isn't necessarily right. I suspect that if you looked at the Sloan-Kettering site and ran their nomogram for post-op conditions, you might find a different projection. Regardless, as John mentioned, all these projections are based on present-day technology; much can change in fifteen years.
And in the next few weeks, Irv will start to feel better, which will help with the gloom that naturally comes when you don't feel well and are being bombarded with dire revelations. There will be many improvements and reasons for optimism.
Ray & I are 7 years down the same track........... and I understand where you are coming from. As Tom says advancements are being made all the time and who knows what is just around the corner.
As always, get a copy of all reports so that you have complete records on hand should you need to move on at sometime in the future.
Your concern is quite natural, but if you look at the facts in the big picture it might not look so bad. Only about 15% of all men who are diagnosed with prostate cancer actually die from prostate cancer. There are of course exceptions, but the much more typical case of a man who dies from prostate cancer is at this point a much more serious case than Irv's. Despite the "PSA era" which we are in, there are plenty of men in the US who still do not get tested until they are symptomatic, at which time their PSA might be 300 and positive DRE (just as a hypothetical, but not uncommon, example for this type of patient). These guys have a much more challenging outlook.
The way I would recommend that you and Irv look at your SVI (seminal vesicle invasion) and your doctor's comment about 30% chance of "cure" is that there is a chance you'll have to get back to work fighting the disease...you may not be done yet.
Last edited by kcon; 11-25-2010 at 05:50 AM.
You've had some excellent responses already, and I hope they have helped you through this rough patch.
I'm not sure where your husband's doctor is getting that 15 year prognosis from, but I have a strong hunch that is on the short side for someone in your husband's circumstances. As others have pointed out, we are learning so much each year to improve management of prostate cancer, even if it should recur.
A recurrence itself is far from the end of the story. Many recurrences are so mild that the patient does not have to do anything, except mild lifestyle tactics, and perhaps mild drugs.
Is your husband's doctor planning to use an ultrasensitive PSA test that is capable of measuring PSA down to <0.01? I'm convinced that's important for the best management of the disease. It can help give you early peace of mind if you get a very low score, or it can give you a very early warning of possible recurrence. The latter is a great motivator for using lifestyle and other tactics to try to minimize the recurrence.
Jim, thats why I come here looking for you, although, it's true, I get several positive responses from other wonderful members here.
I really need your positive outlook now. I've been reading that seminal vesicle invasion leads to a poor prognosis. I don't want to face my retirement years alone and it makes me feel so sad to think that that is now a real possibility. I'm also very frightened about the thought that Irv might get really sick from this down the road. I hate to sound so gloomy but that's my fear talking.
I've already given up on the idea that his spontaneous erection will come back, even with the nerve graft, and I actually feel sad that that has now taken a back seat and become of such distant importance. Now, all I think about is having him by my side through our golden years.
Jim, have you found any research which would throw some light on Irv's situation? For instance, although there is no question, if Irv's PSA isn't at 0 when we get it checked in 6 weeks, then he should have adjuvant radiation therapy, there seems to be a question if his PSA is, in fact, at 0. If that's the case, should he still have adjuvant RT or wait until it goes up and then have salvage RT. I personally think, even though Irv's nerves wouldn't survive, that it would be best for him to have adjuvant RT regardless. Do you have any input on this?
I'm going to hold the positive words you've said close to my heart. I know, also, time brings new developments with it and with our aging baby boomer society, prostate cancer research is of utmost importance.
I'm so happy that you've enjoyed your vacation time. On a lighter note, this reminds me of a movie with Billie Crystal. I think it was called Analyze This where a crazy patient goes searching for his psychiatrist while he's on vacation. It was very funny. However, keep enjoying your vacations and I promise, as much as I might rely on you when time gets tough, I won't follow you on your vacations. I'm hoping that Irv and I can go on a vacation this year, as soon as possible. G-d knows, we NEED it!
Thanks again for being there with all of your positive insight.