Connect
Issues with ProACT incontinence value
For those that are not familiar with ProACT. It is used to aid in reducing incontinence and works quite well. It is something like the artificial urinary sphincter. (AUS) but doesn’t require you to push a button to pee.
Last week I attended a presentation by a urologist who specializes in incontinence. He discussed a lot of different issues, of course, but his experience with products that didn’t work, as well as expected, was very informative.
I know that the urologist I have gone to has said that, even though I’ve had radiation, she would consider using the sling. She was not using. ProACT yet but they were planning on starting to use it.
The Doctor who was doing the presentation had started using ProACT when it first came out. He used it on a lot of patients that would’ve gotten an AUS because he thought it would work just as well, but be easier on the patient. As for the slang, he confirmed that it frequently doesn’t work well for patients who had radiation.
Unfortunately, he found out that the way the ProACT worked was not compatible with people who had radiation. ProACT works by placing two balloons near where your prostate was and they squeeze on the urethra to stop it from leaking. When someone has radiation, it makes the urethra stiffer and as a result ProACT doesn’t work well.
It seems that the only solution to a serious problem of incontinence is the AUS. New models seem to be much smaller.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
This drug is only in the clinical trial stage. I’ve been told it was going to be used to help people who become castrate resistant, and other drug stopped working as well.
Here’s some more information about it, I don’t see any requirement that it be Linked to a specific mutation.
https://www.urotoday.com/conference-highlights/asco-2024/asco-2024-prostate-cancer/152618-asco-2024-arv-766-a-protac-androgen-receptor-degrader-in-mcrpc-initial-results-of-a-phase-1-2-study.html
Can you explain the difference between the two mentioned and the one I have means what?
Either I’m getting very stupid or someone has never taken the time to explain anything to me.
I understand that the name of things change overtime for many reasons but let me use one that most of us know something about: at some point in time someone with clout decided to start calling Manic/Depressive;
Bipolar
Some people say MD is exactly the same as BP
I’ve never read a definitive explanation however I THINK that some people project what THEY BELIEVE as the biggest truth of the matter but I think what happened make things even more confusing.
Does this analogy apply to these two different “ mutations “? And after my 2nd pet/cat scan one doctor interpreted the results one way another had a radically different interpretation.
One mentions cyber knife or proton radiation as a way to manage my cancer if I grew uncomfortable the other doctor said “ you are no longer a candidate for radiation. WOW! That sounds radically different to me. Doc 1 said I had 3 little shadows on my scan the other doc said “ you can rest assured that you will die from this cancer
Talk about a need for a second opinion!
Anyway do you understand the difference between the two types of “ mutation “ I knew I had PC but was never told about a mutation
Any help is much appreciated
Thanks as always!
One of my wife’s best friends is bipolar. They have not spoken since December and they used to speak every day or two. She has been on a depressive streak for at least six months. Normally, she will become manic for a little while normal for a very short time and then back to depression for 3-6 months.
Used to be they called it manic depressive now they call it bipolar. They are the same thing And we’ve seen it get progressively worse over the last 10 years. Two of her brothers have the same thing and her son appears to have it as well.
Now as for recommendations from different doctors. Many doctors do not keep educated about prostate cancer. If you go to a medical oncologist, they specialize in all different types of cancer while a Genito Urinary Oncologist Specializes in prostate cancer and keeps up with all of the latest treatments.
It is likely that when you get poor recommendations from one doctor they are not keeping up. That’s why we recommend going to centers of excellence, You’re not going to find a doctor that’s underestimating what the right treatment should be.
Once your urologist has finished surgery and your cancer comes back, you are not in the right place to discuss future treatment. You need to go to a GU oncologist or a center of excellence so that you can get the latest treatment. Urologist are not trained for advanced prostate cancer Treatment, though Some like to Treat their patients with reoccurrence because it’s very profitable.
I must admit I’ve never heard of “you are never a candidate for radiation”. Yes, if you’ve had radiation in the same area once already, you are not a candidate for having radiation in that spot but you can have radiation somewhere else if metastatic show up.
You don’t need a doctor that tells you you’re going to die from prostate cancer and gives you a date, it is Just guessing. I know so many people that have lived 2 to 3 times as long as the date they’ve been given, even though they had very serious cases initially. Treatment has improved so much that you Need to look for doctors that have expertise in advanced prostate cancer.
-
Like -
Helpful -
Hug
1 ReactionI don't think you understand it unless you have it. I used to tell people just get a grip and I was so stupid . I worked on a psyche ward and now I see first hand. It's like that with everything. Love them unconditionally and sooner later something will stick. Pray pray
Thanks Jeff for your comprehensive reply including your comments on bipolar ( beside my prostate cancer I’ve been DX as being BP However, I’ve had way more doctors tell me that they think I was misdiagnosed ( an interesting story for another place another time ) I like the way you explained your thoughts about not being a candidate for radiation. That thought fits perfectly into my complaints that since days one NO DOCTOR ever mention “ a stage “ nor have they explained 80% of what I learn here from all of you who politely remind everyone “ we are not doctors “ Frankly I think many of the regulars here SHOULD BE DOCTORS OR TEACHERS OF DOCTORS! To teach doctors how to be human and compassionate!
All of that said, I was looking for an explanation of the text he sent me about “ Only active in androgen receptor mutant patients with LBD mutation. You have ATM mutation only”
No doctor has EVER mentioned “ MUTATION “ ANYTHING! To this “ non doctor “ I can imagine that a “ mutation “ in some shape/form is responsible for my cancer. But I now expect to find an answer here more quickly than I will on the VA oncology clinic.
Today is my date for my monthly LUPRON shot. I don’t always get to see the oncologist assigned to me. I will ask if I can talk with him. I have more compassion for him than he has for me. But as “ my oncologist “ in my set of rules to be HUMAN I’m suppose to treat him with that special CARE. Although I can make him laugh when he least expects it I still don’t think that he sees the connection for treating him with a modicum of specialness that equates to making the glue that binds us different than what it is with others. And I hate sounding petty but he has mentioned numerous times that I’m older than him and I LOOK YOUNGER and I’m “ doing better “ ( no very specific explanation ) he texts me which his staff tells me that he’s never done even with Staff. So I think that my sense of humor has loosened him up some. Specifically was the day I gave him a pep talk saying “ we’re in this together Doc and I put my arm around his shoulders and gave him a hug “ that’s when he gave me an unexpected chuckle that made him choke a little as he swallowed unexpectedly and I patted him on his back as my Grandma used to do to me whenever I choked on something I was drinking saying “ something went down the wrong pipe “ which made him laugh harder.
I’m not sure he remembers that but we’ll see today. I have a doctor joke for him.
All of that said, can you explain him “MUTANT” comment?
Much thanks Jeff!
asolidrock,
I like that at some point you said that you realized that a DX doesn’t mean that everyone is EXACTLY THE SAME!
After I was DX’d and BP group therapy was recommended and I sat there listening, it didn’t take long to realize that 1 I was nothing like any of the people in this group
(“Thank God” I thought to myself) but when it was my turn to talk I simply said:” this is my first time in group and it’s obvious to me that each of us may be DX’d BP ‘ WE ARE ALL UNIQUE’ everyone in the group lets out a sound of agreement! Was the sound the same? No way! However there was a universal agreement that all of us needed help and love.
You called it “ UNCONDITIONAL LOVE “ a term that is used so often that I have always wondered is everyone on the same page about THE MEANING OF UNCONDITIONAL LOVE?
I sincerely don’t think so and sadly and questionably I don’t understand how come the subject of “ What exactly is UNCONDITIONAL LOVE?
Think about this : in order for “ LOVE “ to be “ UNCONDITIONAL “ one needs to agree to the “ CONDITION “ to be “ UNCONDITIONAL “ and is something that is not well understood a good idea? Even more questionable are the consequence of rendering it to people who NEED STRUCTURE AND CONDITIONS?
One example SCREAMS OUT AT ME: The mother who was very well trained in the field of psychology, considered a leader in the field and held in the highest esteem in her area. She raised two sons the one that lived at home with her His name was ADAM LANZA who is dead along with his mother and 27 or so little children in an incident called SANDY HOOK!
UNCONDITIONAL LOVE didn’t seem to have the results that everyone expects from rendering it to those HB’s who need something else
I’m so sorry if I triggered or offended anyone by mention this horror story. I cry every time I think of this incident and EVERY MASS SHOOTING THAT HAPPENS
Well actually God is the only one that can love unconditionally because it's His nature to love John 3:16 We are created in His image Genesis 1:26-27 Every person has a desire to be loved and that desire comes from our creator.
ATM is the genetic disorder. I have BRCA2 another genetic disorder.
This comment “ Only active in androgen receptor mutant patients with LBD mutation. You have ATM mutation only” is referring to the fact that you don’t have an LBD mutation, you only have an ATM mutation so the first part of the sentence doesn’t apply to you.
You are correct though. An ATM mutation increases the risk of developing prostate cancer, particularly more aggressive and lethal forms, and is associated with earlier onset of the disease. You should spend some time searching the web for information on ATM so that you are informed.
I do not understand why your doctor is giving you one month Lupron shots. I had six month shots for six years, I know a lot of people that get three month shots. I don’t know anybody that gets one month shots regularly, If you aren’t in Canada, this would be a real profit making adventure for your doctor. I can think of no logical reason you could not get at least a three month shot. You should ask your doctor about this, why you’re getting one month shots when you don’t need to come back every month.
I had an AUS implanted in January. I needed 5 or 6 maximum pads a day. I now need only one thin pad. My surgeon did not make the cuff as tight as it could be because of radiation and the possibility of erosion. I am very happy with the results although it takes a little getting used to,
-
Like -
Helpful -
Hug
1 ReactionJeff, I need to start anew after a run to the store.
I have some very important news to share with you.
Was the name of the place to look for a high quality oncologist something like standard of excellence doctor group?