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.

hammer101 | @hammer101 | Jan 11 9:27am
In reply to @rosewg "Hi Again Hammer101, Hmmm. We’re not really pleased with Jim’s urologist's way of communicating. We expect..." + (show)
@rosewg

Hi Again Hammer101, Hmmm. We’re not really pleased with Jim’s urologist's way of communicating. We expect he's competent and figure since we’re already 3-1/2 months since diagnosis, that the clock is ticking, and so we "should" probably go with him. But, it doesn't feel just right. We’d like a great doctor who we're comfortable talking to and really feel listened to!

So,we’re excited about perhaps connecting with Dr. Frank, who sounds great. My biggest concern is how long it might be to see him and get on his surgery schedule. With the high Decipher score, we don’t want to delay surgery too much longer. As good as Dr. Frank is, he may book out for appointments longer than we feel we can wait to move forward to surgery.

Ahh, a couple ideas come to mind. Maybe a favor that we might ask of you that I’ll private message you about. Of course, please feel comfortable to decline this favor request! But, hey, it doesn't hurt to ask you, right?!

A connection with Dr. Frank is something we'd love to pursue. Please do respond when you read this and the private message, so that I know that you did read them, whatever your thoughts might be about what I’ve asked. I've never sent a private message on MayoConnect. I’m going to try and hope it gets to you.

And just a couple personal questions. Just curious if you live close to Rochester? Jim and I live about 45 minutes away, on a rural property outside Winona, Minnesota. And maybe your real name? (Provided by private message, if you'd prefer AND are willing to share.) That way we could “drop” your name, if we are able to meet with Dr. Frank! Just let us know what you think of my ideas in the private message, OK?! Sometimes I think wonderful happenings just fall into one’s lap. I’m hoping this conversation might be one of those happenings! (I want Jim by my side for many years to come!!)

Wishing You All the Best, Rose

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Rose, good morning. I received your private message and replied with two more messages. I am so glad you are working to address the prostate cancer and not waiting for it to metastasize. Please feel free to contact me whenever, I am retired and always available to talk.

Patti and I live in Iowa, but I grew up about 30 minutes southeast of Winona (La Crosse). As I mentioned in my private message, I referenced a friend to Dr. Frank and he was able to get an appointment fairly quickly (less than two weeks). When I had the RP, we rented an Air BnB condo for 10 days (several blocks from Mayo Methodist surgical center). Because our home is approximately 4.5 hours from Rochester, we wanted to stay close to Mayo-Rochester in case there were any complications. Thankfully there were no complications, but well worth the stay. Great that you live in Rochester!

Talk to you soon,

Jim

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gkm | @gkm | Jan 11 11:33am
In reply to @rosewg "Hey hbp, I'm overwhelmed with gratitude for all the wonderful, encouraging and very helpful messages that..." + (show)
@rosewg

Hey hbp, I'm overwhelmed with gratitude for all the wonderful, encouraging and very helpful messages that I've gotten for Jim and me! He has been leaning toward RP since we learned of the aggressive Decipher score. I was definitely hoping that RP would be his choice, based on all our research and the many excellent comments shared on this thread. I think his decision has been made! Now, hoping for a good scheduling and successful surgery! Thanks for sharing your thoughts and a bit about your "journey." It's so encouraging to read of good experiences like yours. May you continue to have good health in the years ahead!

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Hi Rose. I would second michaelcharle's comment about Jim starting his kegel exercises before surgery and you should go to a physiotherapist who specializes in kegel exercise.

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1 reply
Rose | @rosewg | Jan 11 1:24pm
In reply to @michaelcharles "I had RP at age 72 at Johns Hopkins and my recovery was excellent. There should..." + (show)
@michaelcharles

I had RP at age 72 at Johns Hopkins and my recovery was excellent.
There should a number of excellent surgeons at Mayo Rochester. You need to be comfortable with the choice of a surgeon.
Begin Kegels preop w/ professional PT.
We are all different and respond differently. I was fortunate not to have any surgical recovery or continence issues. ED is a side effect that is slowly recovering.
No question that I would choose surgery.
However, points made by others are valid for consideration.
Best wishes.

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Hi Michael, I appreciate your sharing your age when RP was performed. And that you're doing so well and glad that you've had a very good recovery. Encouraging as related to my husband's 71 years! You mention your ED, which is certainly of lesser importance to us as compared to incontinence, is "slowly recovering" for you. Do you mind my asking how long ago your surgery was. As far as you know, was your cancer confined within the prostate?

I'm certainly aware of Johns Hopkins excellent reputation. (Jim had a second biopsy opinion there; they noted cribriform.) With the additional knowledge of Jim's cribriform and 0.8 "high risk" Decipher score, we're kind of back to square one with our decision plan. Since his biopsy was in late September, we would like treatment soon (and hopefully before the cancer has progressed). We first thought he would have HDR brachytherapy; now he's leaning toward RP. We will talk again with his radiologist this coming Tuesday. And hope to soon be able to have an appointment with another surgeon here who was highly recommended. We did not appreciate how Jim's assigned-to-him urologist spoke to us at times, so it's probably best to shop for a new urologist. MayoConnect sure has a lot of wonderful people willing to share their thoughts and experiences. It's a big help and comfort. Thank you! Rose (and Jim)

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leenielsen | @leenielsen | Jan 11 2:27pm
In reply to @hammer101 "Certainly, my Gleason Score was 7 (4/3). Eleven of the biopsy cores were positive for PC...." + (show)
@hammer101

Certainly, my Gleason Score was 7 (4/3). Eleven of the biopsy cores were positive for PC. My scans also showed "no" spread to lymph nodes or seminal vesicles.

I hope you are scheduled for a RP at a center of excellence and have chosen the best possible surgeon at that COE. The quality of your life, for the rest of your life, will depend on the competence of your surgeon and support staff.

Best of luck with your surgery!!!

Jim

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My Surgeon has performed Prostecomy's for 20 years and has done them robotically for the last fourteen years. He's preformed over a 1,000. I feel I am in good hands...He talked me through everything and he exudes confidence. We have a good plan on the surgery and he will also remove many of the nodes in the pelvic area. Hoping it's "one and done"!

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Rose | @rosewg | Jan 11 8:55pm

I sure hope it's "one and done"for you, too! It sounds like you're in great hands!

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rkurtzjr | @rkurtzjr | Jan 12 7:53am

I chose surgery so as to have another curative treatment if RP fails. In that phase now

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Rose | @rosewg | Jan 12 10:39am

That's a big part of our rationale. Hoping you have a cure!

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kjacko | @kjacko | Jan 13 8:19am
In reply to @gkm "Hi Rose. I would second michaelcharle's comment about Jim starting his kegel exercises before surgery and..." + (show)
@gkm

Hi Rose. I would second michaelcharle's comment about Jim starting his kegel exercises before surgery and you should go to a physiotherapist who specializes in kegel exercise.

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I couldn’t agree more about doing the Kegel exercises. I did them religiously before and after my RP and catheter removal and NEVER had one incontinence issue. Even my surgeon couldn’t believe it. Health and happiness in the future!

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Rose | @rosewg | Jan 13 6:32pm

Wow! Fantastic continence right after surgery! May I ask how old you are? My husband's 71. I expect age makes a difference. And I know that everyone's experience is different. But doing kegel exercise will be a priority! Thanks for sharing a very positive experience!

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hbp | @hbp | Jan 13 10:52pm

Kegels and an excellent surgeon at a excellent facility and good luck, makes the world of difference.

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