My TULSA prostate cancer adventure

[joesxm3]

It has been about a month an a half since my TULSA procedure so I figured I would give an update.

The biggest take away is that I significantly underestimated the recovery process. Even with all the research I did I got the impression that it would be one or two days out of commission and back to normal after a week or so.

My impression of the severity or misery index may be skewed to the high side because I had hurt my back and knee a few weeks prior to the procedure. I was also pretty run down from taking care of my parents for so long with a burst of stepdad activity during November. The back and knee pain made it very hard for me to sleep. One position hurt the back, the other position hurt the knee.

The worst part of the recovery was having to have a catheter for 8 days. I think they attached it too close and it seemed to pull out too much when I sat on the toilet or in a chair. I did not like this at all Sam I am.

I had to sleep in the recliner while I had the catheter and I would wake up every hour or two. At least I did not have to pee. But I found myself tired during the day. I can't say if this was the stress of the procedure or the not sleeping well.

For the past six weeks I was waking up every hour or two. I am not sure if it was because I needed to pee or because of back pain. The past day or two my back seems a lot better and I seem to be sleeping for three hours at a time.

I also found that for the first three days I did not have a BM. And after that my BM pattern changed. As of today I seem to have two or three BM's per day.

I did not have any problem with urinary incontanence. After a month or so I can say that I think my urine stream is much better than it was before the procedure. The only problem is that it seems to leak a little when I finish urinating and I need to blot it with some toilet paper. But overall I am very satisfied on this subject.

I can't report on erectile function That seems to take three months before you can assess the situation. But I am hopeful.

Before the procedure I thought that I would be laid up for a day and then able to resume caring for my step father. That was totally wrong. Fortunately (from one perspective) he was in the LTC facility and I did not run into this problem.

Although I say that the recovery process was much more than expected, I think that it is less than a radical prostatectomy or radiation. I found out that my neighbor had prostate cancer and EBRT for 40 treatments. He told me that he had all sorts of problems with his rectum, digestion and intestines. It sounded like he was much more miserable than me for a month and a half at least.

I have not had much contact with the urology team. After pulling out the catheter the nurse literally walked me out to the checkout counter because I wanted to stay too long.

I am scheduled for a PSA test at 3 months. I will be able to discuss things with the APRN more then.

So bottom line, I am satisfied and would choose TULSA if I could do it over. I am not looking forward to the biopsy at one year. But that will be the acid test.

The principal researcher on the clinical trial comparing TULSA with prostatectomy told me that they had had three TULSA cases that failed the one year test. I am not sure of the quantity, but I think they have done about 50 so far. So that would be about 6%.

I will update the thread once I get my PSA result in March.

 

[Koolau]

It has been about a month an a half since my TULSA procedure so I figured I would give an update.

The biggest take away is that I significantly underestimated the recovery process. Even with all the research I did I got the impression that it would be one or two days out of commission and back to normal after a week or so.

My impression of the severity or misery index may be skewed to the high side because I had hurt my back and knee a few weeks prior to the procedure. I was also pretty run down from taking care of my parents for so long with a burst of stepdad activity during November. The back and knee pain made it very hard for me to sleep. One position hurt the back, the other position hurt the knee.

The worst part of the recovery was having to have a catheter for 8 days. I think they attached it too close and it seemed to pull out too much when I sat on the toilet or in a chair. I did not like this at all Sam I am.

I had to sleep in the recliner while I had the catheter and I would wake up every hour or two. At least I did not have to pee. But I found myself tired during the day. I can't say if this was the stress of the procedure or the not sleeping well.

For the past six weeks I was waking up every hour or two. I am not sure if it was because I needed to pee or because of back pain. The past day or two my back seems a lot better and I seem to be sleeping for three hours at a time.

I also found that for the first three days I did not have a BM. And after that my BM pattern changed. As of today I seem to have two or three BM's per day.

I did not have any problem with urinary incontanence. After a month or so I can say that I think my urine stream is much better than it was before the procedure. The only problem is that it seems to leak a little when I finish urinating and I need to blot it with some toilet paper. But overall I am very satisfied on this subject.

I can't report on erectile function That seems to take three months before you can assess the situation. But I am hopeful.

Before the procedure I thought that I would be laid up for a day and then able to resume caring for my step father. That was totally wrong. Fortunately (from one perspective) he was in the LTC facility and I did not run into this problem.

Although I say that the recovery process was much more than expected, I think that it is less than a radical prostatectomy or radiation. I found out that my neighbor had prostate cancer and EBRT for 40 treatments. He told me that he had all sorts of problems with his rectum, digestion and intestines. It sounded like he was much more miserable than me for a month and a half at least.

I have not had much contact with the urology team. After pulling out the catheter the nurse literally walked me out to the checkout counter because I wanted to stay too long.

I am scheduled for a PSA test at 3 months. I will be able to discuss things with the APRN more then.

So bottom line, I am satisfied and would choose TULSA if I could do it over. I am not looking forward to the biopsy at one year. But that will be the acid test.

The principal researcher on the clinical trial comparing TULSA with prostatectomy told me that they had had three TULSA cases that failed the one year test. I am not sure of the quantity, but I think they have done about 50 so far. So that would be about 6%.

I will update the thread once I get my PSA result in March.

Thanks for the honest and complete update. Here's hoping all goes well in your recovery!

 

[Strong Will]

It has been about a month an a half since my TULSA procedure so I figured I would give an update.

The biggest take away is that I significantly underestimated the recovery process. Even with all the research I did I got the impression that it would be one or two days out of commission and back to normal after a week or so.

My impression of the severity or misery index may be skewed to the high side because I had hurt my back and knee a few weeks prior to the procedure. I was also pretty run down from taking care of my parents for so long with a burst of stepdad activity during November. The back and knee pain made it very hard for me to sleep. One position hurt the back, the other position hurt the knee.

The worst part of the recovery was having to have a catheter for 8 days. I think they attached it too close and it seemed to pull out too much when I sat on the toilet or in a chair. I did not like this at all Sam I am.

I had to sleep in the recliner while I had the catheter and I would wake up every hour or two. At least I did not have to pee. But I found myself tired during the day. I can't say if this was the stress of the procedure or the not sleeping well.

For the past six weeks I was waking up every hour or two. I am not sure if it was because I needed to pee or because of back pain. The past day or two my back seems a lot better and I seem to be sleeping for three hours at a time.

I also found that for the first three days I did not have a BM. And after that my BM pattern changed. As of today I seem to have two or three BM's per day.

I did not have any problem with urinary incontanence. After a month or so I can say that I think my urine stream is much better than it was before the procedure. The only problem is that it seems to leak a little when I finish urinating and I need to blot it with some toilet paper. But overall I am very satisfied on this subject.

I can't report on erectile function That seems to take three months before you can assess the situation. But I am hopeful.

Before the procedure I thought that I would be laid up for a day and then able to resume caring for my step father. That was totally wrong. Fortunately (from one perspective) he was in the LTC facility and I did not run into this problem.

Although I say that the recovery process was much more than expected, I think that it is less than a radical prostatectomy or radiation. I found out that my neighbor had prostate cancer and EBRT for 40 treatments. He told me that he had all sorts of problems with his rectum, digestion and intestines. It sounded like he was much more miserable than me for a month and a half at least.

I have not had much contact with the urology team. After pulling out the catheter the nurse literally walked me out to the checkout counter because I wanted to stay too long.

I am scheduled for a PSA test at 3 months. I will be able to discuss things with the APRN more then.

So bottom line, I am satisfied and would choose TULSA if I could do it over. I am not looking forward to the biopsy at one year. But that will be the acid test.

The principal researcher on the clinical trial comparing TULSA with prostatectomy told me that they had had three TULSA cases that failed the one year test. I am not sure of the quantity, but I think they have done about 50 so far. So that would be about 6%.

I will update the thread once I get my PSA result in March.

I am planning to have a TULSA procedure, I need to know how you are doing with urinary incontinence. Do you still need to wear a pad?

 

[Koolau]

Thanks for the update. Here is hoping everything continues in the positive direction. Keep us posted as many of us are interested.

 

[harley]

Best of luck to you, Joe. I hope your recovery continues and you can return to a relatively normal life.

I don't really know anything about prostate cancr, but I might be finding out. Got a call from my PCP yesterday saying my PSA test was at 5.4, whatever that indicates. I'm supposed to go see a Urologist, so I'll see what that means. Hopefully it won't interfere with me being on the kidney transplant list. That would suck.

 

[Koolau]

Best of luck to you, Joe. I hope your recovery continues and you can return to a relatively normal life.

I don't really know anything about prostate cancr, but I might be finding out. Got a call from my PCP yesterday saying my PSA test was at 5.4, whatever that indicates. I'm supposed to go see a Urologist, so I'll see what that means. Hopefully it won't interfere with me being on the kidney transplant list. That would suck.

Just a quick Google search got me to a site indicating some possible answers to your questions. Be advised that studies always sound "scary" but this one indicates (to me) that overall survival isn't much worse if cancer is present but might lead to longer transplant wait times (not what you want to hear.) I never know if such info is more scary than its worth - especially since 5.4 may not mean anything. I'm guessing your doc will advise on all this kind of stuff and, let us hope, it's just a false alarm. Lots of PSA tests are though YMMV.

https://www.kidneymedicinejournal.org/article/S2590-0595(21)00206-5/fulltext

 

[Car-Guy]

I don't really know anything about prostate cancr, but I might be finding out. Got a call from my PCP yesterday saying my PSA test was at 5.4, whatever that indicates. I'm supposed to go see a Urologist, so I'll see what that means. Hopefully it won't interfere with me being on the kidney transplant list. That would suck.

I'm not a doctor nor an expert but I've know a few folks that have had PC over the years. "As I understand it", any PSA over 4 is worrisome, but it doesn't mean PC (necessarily). My Dad and uncle both had PSA's just over 10 and their biopsy's were negative. So it does happen.

 

[athena53]

To me the difference is that the surgeries don’t cause a woman to not be able to have sex or difficulty controlling her urine like treatment for prostrate cancer does for men. Even the radiation seeds caused both these issues for my ex.

I agree. A 72-year old acquaintance chose radiation rather than removal of the prostate for just those reasons. He survived to age 89.

 

[rodi]

@joesxm3 - Any updates? Specifically, side effects including urinary incontinence.

My husband's biopsy was not great so we're weighing robotic surgery, radiation, or TULSA (which isn't available in San Diego - would probably happen at UCLA.) One of our concerns about TULSA is the lack of long term data, since it's so new... Any info you can provide would be awesome.

 

[joesxm3]

The only time I wore a pad was on the way home from having my catheter removed and that was probably not necessary although I drank so much water I had to stop to pee halfway.

I have not had any UI issues. For the first couple months my penis would drip after urinating and I wiped with toilet paper but that has stopped.

I might have had three or four instances where I dribbled enough to want to change my underpants but nothing close to "pissing my pants".

I am not sexually active so I have not tried that out. My guess is that it "sort of works". The doctor said if needed some pills would probably fix things. Only one nerve bundle was spared by my procedure but the other one probably was not completely roasted.

I had a PSA test last month and it had dropped nicely. I forget the exact number. Probably less than two. It was right near the median post TULSA value.

I have another PSA in July and MRI and biopsy at the one year mark.

I have been happy with the results so far.

When I had the PET/CT it remarked about coronary artery calcification. I am being evaluated by a cardiologist. My calcium score was high moderate risk. My advanced lab panel looks good except for lipids.

Yet to talk to doctor. I am getting CIMT imaging next month and probably will get CT Angiogram with AI from a company called Cleerly.

I digress. But the calcium scared me into a low carb diet and exercise. I have lost 25 lbs so far and feel much better.

I wish I had started the diet and intermittent fasting a year earlier since there is some evidence that restricting sugar starves cancer cells and might have slowed mine down for a while.

Good luck with whichever procedures you all end up getting.

 

[joesxm3]

Another possibility for focal therapy is high dose brachytherapy. I seem to remember that UCSF was the hot spot for that stuff.

 

[joesxm3]

Harlee. Don't let them bum rush you into a biopsy. If you are investigating further get an MRI with the option to follow with an MRI guided biopsy. The random 12 core biopsy is out of date. Especially if done instead of MRI.