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.

 

[jkort789]

Agree with above post. I was rushed to random biopsy in Jan.
After gaining insight I would push for MRI guided biopsy.
I ended up with Brachytherapy last week. All good so far.
I was thrilled oncologist was good with just Bracy and no ADT (hormones).

 

[joesxm3]

The random 12 core grid only finds something like 75% of the cancer. MRI with targeted biopsy is up in the 90%.

I may be off a little but there is a significant difference. Not to mention avoiding unnecessary biopsies.

 

[Car-Guy]

Reading through this and numerous other related threads, I'm a little confused (often happens). Who calls the shots for PC treatment plans? A urologists or an oncologist or your PCP or some other medical professional? Is there a primary doctor that leads the way?

 

[grasshopper]

Me and my urologist have been on the same page for 12 years. If at some point I have to make any really serious decisions I may involve an oncologist.

 

[rodi]

Reading through this and numerous other related threads, I'm a little confused (often happens). Who calls the shots for PC treatment plans? A urologists or an oncologist or your PCP or some other medical professional? Is there a primary doctor that leads the way?

I can tell you how it's working for us. DHs PSA was elevated so he was referred to a urologist... She ordered the MRI. Results of the MRI showed a "lesion" (they didn't call it a tumor till the biopsy confirms.). That resulted in the order out in for an MRI guided biopsy. That was done by a urological surgeon (not the first urologist).

We met with him last week and he confirmed cancer, Gleason 7. The core that was in the lesion (now confirmed tumor) was the only core that came up cancerous. He went through options... A lot of them. He left us with the impression that radical prostatectomy was the good choice. But he's a surgeon. If we go that way it will be with the Da Vinci robot . But the health system encourages meeting with an oncological radiologist. We have that appointment tomorrow. We were told they'll want a PET/CT also.

DH and I have been reading up on pros and cons, side effects, long term outcomes of the various options. The meeting with the radiologist will help us narrow it down to brachytherapy or high dose brachytherapy... But there may be info we are missing. We have a lot of questions for the radiologist. We may change our minds and decide on surgery or external radiation if the answers tomorrow dictate those are better options.

We did a lot of reading about the TULSA but since Medicare doesn't cover it, we're leaning toward one of the other options. And since TULSA is new they didn't have the long term stats (10 and 15 years). Even the high dose brachytherapy only barely goes out 10 years since it is also newer.

Back to the question. If we opt for surgery the urological surgeon will be in charge. If we opt for radiation the oncological radiologist will be in charge. But the decision lies in DHs hands.

 

[Car-Guy]

Thanks for that... I think Seems it depends a great deal on which option the "patient" selects.

 

[braumeister]

PET scans are amazing. I was blown away when I saw the one my wife had.
But yes, there are so many options and so much to think about. Wishing him well in making that decision.

 

[joesxm3]

Rodi.
Was the Gleason 7 a 3+4 or was it 4+3.
If it was only one core and the lesser 3+4 I would question why they are rushing to a radical prostatectomy.

In my case, the first biopsy had one core of 3+4. The urologist sent it to Decipher for mRNA biomarker analysis that confirmed the decision for active surviellance.

The next year there was one 4+3 and two 3+4. He said we treat based on the highest pathology. Decipher confirmed it was agressive. So we moved to treatment.

I guess if yours is 4+3 it might indicate treatment now.

But if only one core it could be candidate for focal therapy and not cut out the whole prostate.

But it is an emotional decision and if you just want to get the cancer out of the body NOW, that is an understandable position.

 

[joesxm3]

In my case I selected the urologist to go to in the first place because he was semi-famous as a pioneer of MRI guided biopsies. So he had his PA do the first visit then after MRI he stepped in for the biopsies and consultation.

For the TULSA his partner urologist installed the equipment up my urethra. They take turns doing it and my guy may have been on vacation.

The planning for the TULSA while in the MRI was done by two doctors that I think are radiation oncologists along with the urologist. Once they were happy with the programming of the target zone, the junior radiation oncologist ran the machine.

This was the same team that is running the clinical trial so there may have been more than usual.

For follow up the PA is handling it and one of the two urologists will do my biopsy in December.

 

[jkort789]

Rodi, I had the same question as Joe, 3+4 or 4+3?
I was 4+3 so it was advisable to treat.
Initially I was thinking surgery. Just be done with it. But it is not that simple.
If I had to do ADT I would have done surgery. I have a very active life. The potential effects of hormone treatment just about brought me to tears.
If your Rad/Onc doc would consider Bracy with no ADT it might be an option. (Fair amount of research suggesting the side effects of ADT outweigh the benefits.)
Seems like you have a partner vested in your care. I did also. What a blessing!
Information overload is mind mumbling.

 

[rodi]

It is 4+3. Unfortunately.

 

[ChrisC]

You can learn some things from the experience of others. I had Gleason, 3+4, favorable, after an MRI fusion biopsy in Aug 2023. 5 out of 12 cores disclosed cancer, with one score Grade 2, the rest were Grade 1 with one a borderline Grade 1-2.

Initially, my urologist and the surgeon who did the fusion biopsy thought I could be a candidate for watchful waiting or radiation seeds with no ADT. In exploring potential HIFU treatment (high intensity focal treatment similar to TULSA) we did PET-SCANS and genomic testing. PET-SCAN showed no spread outside of prostate. But the genomic testing was a game changer, in the eyes of all I consulted: 2 surgeons and 2 radiation oncologists, including recognized experts from the Duke Cancer Center. All recommended either RP or EBRT with ADT and all believed that I could probably expect the same results from either treatment.

I choose EBRT with ADT as I felt it gave me the best chance for a cure. The experience of my friends weighed a lot on me. Although everyone’s cancer is likely to be different, one friend had RP at Johns Hopkins and evidently not all was surgically removed around the margins; a few years after the RP, he later went through prostate salvage treatment consisting of ADT and 44 sessions of EBRT -- the cancer had evidently went outside the now, non-existent prostate shell; unfortunately, that treatment didn't prevent the spread to the pelvis area and he now is under ADT and booster drug therapy, likely to last his lifetime -- he's 78. Another friend with RP treatment at 74, had major incontinence issues for a year after the surgery, though he appears to be completely cured for the last 8 years.

I finished my 28 sessions of ERBT last month and I expect the ADT to wear off by the end of the year. My wife laughs when I complain about the hot flashes since I didn't really appreciate her angst when she went through these years ago. Otherwise, I hadn't been significantly saddled by the radiation treatments - some minor fatigue, and a trend towards weight gain that I fought by more vigorous exercise.

 

[rodi]

I didn't want to completely hijack this thread but thought I'd share what we discovered over the last two days.

Only two doctors do Tulsa pro in California. Several more show on the Tulsapro website but they are not currently offering it. That info seems out of date. (Lots of phone calls to check.). Closest is UCLA. None in San Diego. The other one in California that does TULSA is Stanford (even further away). There is a center in Arizona that also offers it... (Closer than Stanford)

Brachytherapy also seems to be out of favor here in San Diego... The network hubby is in (Sharp) doesn't do seeds. Two other hospital network systems mentioned it on their websites (Scripps and UCSD) but don't currently have Doctors on staff that do this.

Talking with the Tulsa people at UCLA they are highly selective in who they consider. Our feeling was that they are looking for, exclusively, high success candidates. I get that... It's new... Data is still being gathered.

UCLA confirmed TULSA is not covered by any insurance. But Google search suggests that may change next year. (new code for Medicare starting 1/1/2025)

Hubby has weighed his options and is moving forward with EBRT with hormone therapy. He's happy with his decision, and that makes me happy.

@joesxm3 thanks for starting this thread. It was very useful. I really appreciate your insights.