1. < Prostate Cancer

Knowing ASAP if with recurrence - Your Thoughts, Please!

Posted by Rose @rosewg, Jan 9 11:44am

My husband had planned radiation (HDR Brachy or SBRT) for 3+4=7. But since we have learned of cribriform and now a Decipher "high risk" score, we now have more concern of possible recurrence. IF with a recurrence, would want to begin re-treatment ASAP. We know PSA doesn't hit nadir for some time, and so doesn't really define whether all cancer is gone. After surgery PSA is hopefully "undetectable" by 3 months and so easier to interpret surgery's "success." So the dilemma: Whether to continue with radiation plan or to choose robotic prostatectomy. QUESTION: Your thoughts; "what would you do"? Thanks for any responses!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 16 8:40pm
In reply to @rodney1959 "I want to thank the support group for the call yesterday regarding prostate cancer and depression...." + (show)
@rodney1959

I want to thank the support group for the call yesterday regarding prostate cancer and depression.

As with many of my brothers here I have had dark moments. The presentation let me realize my dark moments are not symptoms of depression. I now know depression is not a concern I have to address.

Jump to this post

Hey @rodney1959, I'm glad the presentation at last week's Zoom meeting resonated with you.
Cancer can take an emotional and mental toll. Having dark moments is normal.

Are you newly diagnosed? In treatment? After treatment?

REPLY
1 reply
Rose | @rosewg | Jan 17 8:07am

MayoConnect has meant the world to Jim and me. Our thanks to so many kind people who have shared your thoughts in this, and other, threads. Yesterday was a very good day for us. We met a wonderful doctor who is now Jim’s wonderful doctor! “I’m sorry this has come up for you” were his first words to us. We knew we were in the right place! A treatment plan has been decided upon, which is a huge milestone in Jim’s journey. Surgery is scheduled for the end of February. And we’re on a waiting list, in case it might happen sooner.

REPLY
2 replies
Tom | @tom86 | Jan 17 11:21am
In reply to @rosewg "MayoConnect has meant the world to Jim and me. Our thanks to so many kind people..." + (show)
@rosewg

MayoConnect has meant the world to Jim and me. Our thanks to so many kind people who have shared your thoughts in this, and other, threads. Yesterday was a very good day for us. We met a wonderful doctor who is now Jim’s wonderful doctor! “I’m sorry this has come up for you” were his first words to us. We knew we were in the right place! A treatment plan has been decided upon, which is a huge milestone in Jim’s journey. Surgery is scheduled for the end of February. And we’re on a waiting list, in case it might happen sooner.

Jump to this post

Making the decision is a huge part of the process. I went with surgery as well. It is really the only way to learn the exact extent of the prostate cancer, the entire removal of the culprit, and the best way to move forward. We spoke to the country's best and I remember the doctor's opinion when we pinned him down to learn what he would do if it were him. He responded,
"I would want it out of there." That was the decider in my opinion. For me, the worst part was waiting for the surgery and it was really not that bad. Best wishes.

REPLY
1 reply
rodney1959 | @rodney1959 | Jan 17 6:19pm
In reply to @colleenyoung "Hey @rodney1959, I'm glad the presentation at last week's Zoom meeting resonated with you. Cancer can..." + (show)
@colleenyoung

Hey @rodney1959, I'm glad the presentation at last week's Zoom meeting resonated with you.
Cancer can take an emotional and mental toll. Having dark moments is normal.

Are you newly diagnosed? In treatment? After treatment?

Jump to this post

Diagnosed in Feb 2023. Removed prostate in Jun 2023. During follow up found I have early stages of stage 4 in September. So I'm new to stage 4.
Getting a triple dose treatment as recommended by Mayo. Quevada consulted with me and told me I have "many years ahead" because of early stages and treatments available.

REPLY
hammer101 | @hammer101 | Jan 18 7:58am
In reply to @rosewg "MayoConnect has meant the world to Jim and me. Our thanks to so many kind people..." + (show)
@rosewg

MayoConnect has meant the world to Jim and me. Our thanks to so many kind people who have shared your thoughts in this, and other, threads. Yesterday was a very good day for us. We met a wonderful doctor who is now Jim’s wonderful doctor! “I’m sorry this has come up for you” were his first words to us. We knew we were in the right place! A treatment plan has been decided upon, which is a huge milestone in Jim’s journey. Surgery is scheduled for the end of February. And we’re on a waiting list, in case it might happen sooner.

Jump to this post

Awesome news and so glad all worked out for you and Jim!!

REPLY
heavyphil | @heavyphil | Jan 18 4:15pm

Congratulations Rose to you and Jim....that FIRST step is always the hardest! Best of luck!

AL

REPLY
Tom | @tom86 | Jan 18 6:54pm
In reply to @tom86 "Making the decision is a huge part of the process. I went with surgery as well...." + (show)
@tom86

Making the decision is a huge part of the process. I went with surgery as well. It is really the only way to learn the exact extent of the prostate cancer, the entire removal of the culprit, and the best way to move forward. We spoke to the country's best and I remember the doctor's opinion when we pinned him down to learn what he would do if it were him. He responded,
"I would want it out of there." That was the decider in my opinion. For me, the worst part was waiting for the surgery and it was really not that bad. Best wishes.

Jump to this post

Hi Rose,
I am Tom's wife. Being the spouse in this situation can be very difficult. It is a step by step process. Not the way anyone planned or looked forward to their retirement. We have learned how many families are going through this, however, how they have dealt with it all, and for the most part, positive outcomes. Tom was diagnosed in 2020. If you have any wife to wife questions, I am here. Best, Dee

REPLY
2 replies
Tom | @tom86 | Jan 18 7:02pm
In reply to @tom86 "Hi Rose, I am Tom's wife. Being the spouse in this situation can be very difficult...." + (show)
@tom86

Hi Rose,
I am Tom's wife. Being the spouse in this situation can be very difficult. It is a step by step process. Not the way anyone planned or looked forward to their retirement. We have learned how many families are going through this, however, how they have dealt with it all, and for the most part, positive outcomes. Tom was diagnosed in 2020. If you have any wife to wife questions, I am here. Best, Dee

Jump to this post

P.S. Looks like I replied to our own post. Hope you see my post, Rose. Dee

REPLY
Rose | @rosewg | Jan 18 8:49pm
In reply to @tom86 "Hi Rose, I am Tom's wife. Being the spouse in this situation can be very difficult...." + (show)
@tom86

Hi Rose,
I am Tom's wife. Being the spouse in this situation can be very difficult. It is a step by step process. Not the way anyone planned or looked forward to their retirement. We have learned how many families are going through this, however, how they have dealt with it all, and for the most part, positive outcomes. Tom was diagnosed in 2020. If you have any wife to wife questions, I am here. Best, Dee

Jump to this post

Hi Dee,
We've certainly been on some roller coaster riding to get to this point. And Jim hasn't even had treatment yet. But we feel confident that we've made a best treatment choice and are especially thrilled that we just connected with the right urologist to remove Jim's prostate (on February 26). We're on our way!

So while I kinda feel like I've already been through the wringer, we're very much at the beginning of this journey--wherever it takes us. Jim and I are optimistic. The next big step will be the prostatectomy. And we'll pray for good news, once the entire prostate is then biopsied!

I need to stay in the moment. This is definitely a one-day-at-a-time experience! I'm really a worrywart by nature, so this is a life challenge for me.

I really appreciate your reaching out to me! If I want to write to you, can I do so by private messaging you at @tom86? How are you and Tom doing? Well, I hope! Yes, I would love to have some occasional chats, wife to wife. Everyone who loves someone with cancer is intimately connected. Please do get back in touch anytime you'd like to!

Wishing you and Tom well!
Rose

REPLY
1 reply
Tom | @tom86 | Jan 18 9:06pm
In reply to @rosewg "Hi Dee, We've certainly been on some roller coaster riding to get to this point. And..." + (show)
@rosewg

Hi Dee,
We've certainly been on some roller coaster riding to get to this point. And Jim hasn't even had treatment yet. But we feel confident that we've made a best treatment choice and are especially thrilled that we just connected with the right urologist to remove Jim's prostate (on February 26). We're on our way!

So while I kinda feel like I've already been through the wringer, we're very much at the beginning of this journey--wherever it takes us. Jim and I are optimistic. The next big step will be the prostatectomy. And we'll pray for good news, once the entire prostate is then biopsied!

I need to stay in the moment. This is definitely a one-day-at-a-time experience! I'm really a worrywart by nature, so this is a life challenge for me.

I really appreciate your reaching out to me! If I want to write to you, can I do so by private messaging you at @tom86? How are you and Tom doing? Well, I hope! Yes, I would love to have some occasional chats, wife to wife. Everyone who loves someone with cancer is intimately connected. Please do get back in touch anytime you'd like to!

Wishing you and Tom well!
Rose

Jump to this post

Hi Rose,
Well, we have been there for sure. You have mentioned several things regarding Jim's condition. Are you being treated at a Center of Excellence? Forgive me if you have already said, I am late to this conversation.
I, too, was frantic at the diagnosis and for 3 years we followed Tom's PSA as it appeared stable. Suddenly, it rocketed. Then we knew.
Tom has had the Decipher, multiple pathology post surgery opinions (Mayo, Hopkisn, UCSF) and everthing else we could find to sort through this journey. You have not reached that point, however, once again, if you have any questions (although no one knows for sure) I can tell you what our situation was/is and how we are pursuing any and all avenues for cure
Keep the faith, Dee

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.