Patti's Friends

View All

Patti's Groups

PSA Persists After RP

31 members
Radiation

27 members

Hormone Suppression

35 members

View All

Patti's Page

Latest Activity

Mike left a comment for Patti Oct 7

Patti left a comment for Mike Oct 6

Mike left a comment for Patti Oct 6

Angela Jenkins left a comment for Patti Oct 6

Patti started a discussion called While on hormone treatment, can PSA rise due to some trauma, such as bleeding? in PSA Persists After RPOct 6

Patti commented on the group Radiation Oct 6

Patti commented on the group Hormone Suppression Oct 6

Patti joined 3 groups. View GroupsOct 6

Profile Information

Have you been diagnosed with prostate cancer?: no

What brings you to the New Prostate Cancer InfoLink social network?: My husband was diagnosed with PC at the end of 2003. Dr. Krongrad did his surgery april 2004. He continues to battle this disease - rising PSA -- and just recently his CT scan showed a PC metasteses in the lung. Bone scans were clear. He is young with a Gleason Score of 8 and T3 -- PSA doubling + in 3 months time. We are seeing his oncologist tomorow. Hates the thought of hormone treatment -- can anyone give us an encouraging word or know of another alternative?

Would you help us grow the network? Would you tell others about it?: Yes -- I have already told several people about it.

About Me:: 57 years old -- active -- married 39 years to my childhood sweetheart -- Grandmother of 2 --

Comment Wall (17 comments)

You need to be a member of The New Prostate Cancer InfoLink to add comments!

Join this network

At 8:28pm on October 6th, 2008, Mike said…: Hi again Patti. I understand your concerns about the PSA not having gone to zero. However, this happens for some men, and you need to find a way to be patient or you will worry yourself (and him) into a tizzy! :O)

Your husband's PSA could very easily vary up and down a little below 1 ng/ml for years, in which case, even though it hasn't gone to zero, it might as well have. Let me know what the oncologist says after you meet with him tomorrow. My guess is he's going to tell you both to wait and see what the PSA is again in another month or two. I have been privy to many cases over the years where the PSA goes up and down a little like this. Maybe in another month it will drop back down again.

At 1:33pm on October 6th, 2008, Mike said…: Dear Patti: I saw your question on the Radiation group. First, the hormones are working if they have dropped your husband's PSA from 30 to 0.3 ng/ml. A reading of 0.34 ng/ml is well within the normal margin or error for a test like this.

Second, from what you say, it appears that your husband's bladder wall was damaged during his radiation treatment. Although they tried to cauterize the area to prevent the bleeding, it seems that this is not working. So long as he continues to have bleeding in the bladder, there will be risks for clogging of the ureter and difficulty urinating. You and your husband need to have a very serious conversation with the doctors about what they think is doable to solve this problem and the real chances of success of the procedures they suggest.

Finally, I know of no reason to believe that this problem with your husband's bladder will affect his PSA level significantly. How long the hormone therapy will work should be completely independent of the bladder issue (as far as I am aware), but you should check this with the doctors.

At 10:03pm on October 5th, 2008, Angela Jenkins said…: Patti, I'm sorry to hear that Paul's results were not better this time. Starting discussions in the groups you joined will give you the benefit of other's experiences with similar situations. There are lots of guys here that have been battling this disease for many years. I'll watch for your post and see what you hear. This PC journey appears to be a series of ups and downs. Don't let the "down" moments keep you discouraged. We have to keep fighting and find the answer that will benefit him best. We're here to help in any way.

At 7:16pm on October 5th, 2008, Angela Jenkins said…: You live outside the city.....my sister lives in Chester. We are in NY several times a year. I'll definitely let you know the next time we're there. And if you guys get down our way, let me know. We'll hook up.
Yes, saw the Bucket List. Good movie about life and what's important.
I'm glad Paul's doing better. I'll check on you soon. Give Paul our best.

At 3:53pm on October 4th, 2008, Angela Jenkins said…: I'm so sorry to hear that the past 48 hours have been so unbelievable. I obviously had you guys on my mind for good reason. Jimmy had his LRP last November. He's done great - no real complaints. I can identify with you more from what we went through with my Dad. It may take a little time for things to clear up, but they will. My dad had radiation first. It overshot and hit his hip, causing deterioration and he eventually needed a hip replacement. That was back in 1993-1994, so things have come a long ways since then. I understand the "targeting" is much more precise. But as in Paul's case, it has effected his bladder. My father had the same thing happen. Apparently it's more common than we realized. I've seen several of the guys on the network have the same thing happen - they had to go back in, clear it out and put the cathether in again. We visited with Mati and Steve in August. He had the same thing - went back four times, I think. It was very frustrating, but did eventually heal up. I'm glad you wrote. It definitely helps to talk it out. And having a community here that has been there is an amazing benefit. We do have quite a bit in common - Jimmy and I just celebrated 34 yrs of marriage - and you can imagine that this year we really had a lot to celebrate. Our life is full with 3 daughters and 4 grandchildren. I think keeping our focus on the big picture of life is the key. As you said, we have so much to be thankful for. I find that I draw strength from the areas in life that are good, and it helps to get me through the areas that are not so great. You guys will get through this and Paul will get better. It's just hard when you're in the midst of it. If you have specific questions you want answered with regard to the radiation, you might want to join the radiation group and start a discussion (send it out to all the members). I'll be glad to help you with it if you want. I find it most helpful to hear from the other members about their experiences. Patti, if you ever want to talk, please e-mail me your number (ajenkins56@cox.net) and I'll give you a call right back. The friendships we've made here on the network have been invaluable. Dr. K was here in VA a couple of weeks ago and several of his patients and friends got together. It was the coolest to talk to others about what they had been through, where they were now, and how they made it. I don't know where you're located (I'm in Virginia Beach, VA), but it would be great to meet one day. We travel a lot, so I may be in your neck of the woods some time!!! I'll check back with you guys after Tuesday and see how things went. Patti, keep a positive attitude and help Paul focus on how great your life is. Take Mike's advise.......go out for a nice dinner and put all of this aside for a little while!!! We'll talk soon.

At 10:51pm on October 3rd, 2008, Angela Jenkins said…: Patti - how did the doctor's appointment go this week? jWhat did they say was the cause of the blood in his urine? Did they put him on another round of hormones? I know it's a busy and stressful time. But try to stay in touch with us. It helps to stay connected with this community where we find so much support.

At 1:03am on September 21st, 2008, Angela Jenkins said…: Patti - another month has come and gone. How's he doing with his treatment? Thinking of you.

At 9:40am on August 16th, 2008, Angela Jenkins said…: Patti - how is your husband doing on the hormone treatments? You might find some good info in the Hormone Suppression group. When will he get a follow up PSA? Stay in touch. We care.

At 11:17pm on June 15th, 2008, Patti said…: Thanks for reading my update, Angela -- that is so kind of you to keep in touch! We'll be traveling for a couple of weeks, and then towards the end of the two weeks, he will start to take the pills and then get a hormone shot at the beginning of July. He is really dreading the hormones -- maybe it won't be as bad as last time since he underwent radiation at the same time last time.....................but we'll see..........

Thanks again..........

Patti

At 9:45pm on June 15th, 2008, Angela Jenkins said…: Patti - just read the update on your husband. I'm sure you have alot going on right now. Please keep us updated as to how he's doing.