My TULSA prostate cancer adventure

[joesxm3]

I was just about to update with a report. Just over six months post TULSA my PSA was 0.7 compared to 1.2 at three months.

I would definitely recommend TULSA, at least based on my results so far.

My doctor orders a Decipher test that looks at RNA markers in the biopsy tissue to assess the aggressiveness of the cancer. My second Decipher test was markedly different from the first.

One thing I gave come to realize is that each tumor is individually different. So if you have more than one the genetics may not be the same.

Another thing I am starting to think is that cutting out sugar and highly processed carbs like bread and pasta may well have an effect slowing down cell growth. This also has a big effect on pre diabetes and cardiac biomarkers.

 

[Car-Guy]

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

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.

Good friend of mine (I've written about him here before) had EBRT and ADT two+ years ago. He had a high Gleason score (I think it was a nine, maybe). I do know his last PET Scan was negative, which means no detection of the disease or total remission.

PM me if you have questions. I can call and ask him if I don't know the answers.

 

[rodi]

We got good news from DH's PSMA Pet/CT. Cancer is completely isolated to the prostate, on one side only, less than half of that side... so he's at 2a staging.

This means his choice of radiation is still on the table.

He gets his hormone blocking shot on Friday. In mid September he gets another PSA, another CT, and then starts radiation treatments. The hormone blocking shot will keep the cancer contained and shrink the prostate - which is why they wait two months from starting the hormone therapy to starting the radiation.

I wish insurance covered TULSA... that was definitely DH's first choice. (Followed by brachy seeds- which isn't available in our area.)

 

[Car-Guy]

We got good news from DH's PSMA Pet/CT. Cancer is completely isolated to the prostate, on one side only, less than half of that side... so he's at 2a staging.

This means his choice of radiation is still on the table.

He gets his hormone blocking shot on Friday. In mid September he gets another PSA, another CT, and then starts radiation treatments. The hormone blocking shot will keep the cancer contained and shrink the prostate - which is why they wait two months from starting the hormone therapy to starting the radiation.

I wish insurance covered TULSA... that was definitely DH's first choice. (Followed by brachy seeds- which isn't available in our area.)

From what my friends tell me (2 of them now have PC), the hormone therapy is the toughest part. It takes your energy levels to near zero but it does seem to stop the PC progression. Then the targeted radiation treatments kill the cancer. Problem is "some" doctors like to keep their patients on the hormone therapy long after (years) the radiation treatment is done even when the PET scans are 100% clear.

 

[braumeister]

We got good news from DH's PSMA Pet/CT. Cancer is completely isolated to the prostate, on one side only, less than half of that side... so he's at 2a staging.

Definitely encouraging, so I'm happy for him. In every case I'm familiar with, having it contained in the capsule leads to success. Continued best wishes.

 

[rodi]

From what my friends tell me (2 of them now have PC), the hormone therapy is the toughest part. It takes your energy levels to near zero but it does seem to stop the PC progression. Then the targeted radiation treatments kill the cancer. Problem is "some" doctors like to keep their patients on the hormone therapy long after (years) the radiation treatment is done even when the PET scans are 100% clear.

He's been told it's a 6 month duration. Period. Starting today. The main reason they wanted to do hormone therapy was to shrink the prostate to "make the target more manageable.". The radiologist reviewed the studies of hormone blocking only, radiology only, or both together. Much better cure rate with both in combo.

 

[joesxm3]

Just a small update. Things continue to go well. I had a PSA test and it dropped to 0.54 at 9 months from 0.70 at 6 months.

Unfortunately they want me to go for MRI and biopsy in December. I prefer not to but I guess they want to be sure they cooked it all. Or maybe they just want to keep their production numbers up to spec.

 

[Koolau]

Just a small update. Things continue to go well. I had a PSA test and it dropped to 0.54 at 9 months from 0.70 at 6 months.

Unfortunately they want me to go for MRI and biopsy in December. I prefer not to but I guess they want to be sure they cooked it all. Or maybe they just want to keep their production numbers up to spec.

Thanks for the update. Glad things are looking good for you.

I suppose the MRI/Biopsy are just part of the drill. Certainly not something you look forward to, but probably worth the extra discomfort for the assurance that all is well. Best luck and do, please, keep us posted.

 

[rodi]

I can understand why you don't want to do the mri/biopsy again. But I also see the benefit of getting tissue to confirm the cancer is gone.

Can they just do imaging? When my husband was going through the diagnosis process they imaged as the first step - and didn't call for the biopsy/mri till after the image showed a lesion.

Or does the 'cooking' make the whole prostate (what remains) look like a lesion.

My husband just headed out for his 7th (of 28) radiation treatments. So far it's been a lot less intrusive than the biopsy was. So I can understand why you'd want to avoid it.

 

[joesxm3]

I guess the question is how good is the radiologist at reading post-TULSA MRIs. In the clinical study there should be 50 or 60 ahead of me in the process.

The annual biopsies are the protocol for the trials. I asked if that needed to be the same for me and they said yes.

I guess the biopsy is just a cost of doing business.

 

[joesxm3]

Grok AI said that it had no direct confirmation of the need for biopsy after TULSA but that general principles would indicate it is a reasonable precaution.

Microsoft co pilot which I think is chat GPT said that biopsy is typically recommended after TULSA and outlined the plan of care they are doing to me.

Since the principle researcher for the studies did my TULSA I trust what they say. This will be my third. I hope no complications. They will have me take two ciprofloxacin to prevent infection.

The previous two were ok although I was peeing out blood clots for a couple hours after.

 

[rodi]

Thanks for answering, @joesxm3

 

[joesxm3]

Well, I survived the biopsy with minimal complications.

However, there was some concern on my part since the MRI still showed the original lesion.

Using the newer micro ultrasound my doctor saw a suspicious shadow on the left side (the clean side last year). He did 3 targeted cores of this area. One core came back with <5% Gleason 3+3 (a.k.a. grade group 1).

We had decided to spare the nerve bundles on the left side, which may have allowed this to develop in the remaining tissue.

I have to discuss with my doctor on Monday. I am guessing he will recommend active surveillance as would be the case with a new patient.

Could have been a better result, but certainly could have been worse.

I will update on Monday.

 

[Midpack]

Thanks for the update, we’ll be pulling for you. I start treatment in Jan, chose SBRT. I will also resist further biopsies as much as possible. I’d like to think PSA will tell me when/if another biopsy is needed.

 

[joesxm3]

Thanks for the support.

My PSA had dropped to .54, which I thought was low but the pathology report flagged it as elevated.

 

[Dreamer]

Thank you, Joe, for giving us such an in depth explanation of your Tulsa experience. I am wishing you well in the future.

My DH is in the watch and wait category for a couple of years. He has had the MRIs and biopsies.

Good luck to all that is experiencing this problem. I am reading everything, in case DH's pc goes from watching and waiting to something needs to be done now.

 

[joesxm3]

One thing that I have started to think based on some research is that if you are under active surveillance, it might not be a bad idea to cut way back on sugar and carbohydrates. There are some studies that show this may slow tumor growth.

 

[grasshopper]

My urologist says I am the poster boy for active surveillance. I have been a vegetarian, with some fish for 25 years, lost 35 pounds at Dx, limit my alcohol, walk daily, and get more exercise around the ponderosa. Try to eat whole grains, beans, soy, use turmeric, and allspice for their anti inflammatory properties. Smile a lot.

 

[joesxm3]

My doctor was happy with the biopsy results. He said that most men over 65 will have some amount of grade group 1.

He took 12 grid cores and 3 each of the two suspicious areas. One core had less than 5% GG1. The other cores were consistent with post ablation cell damage.

I asked what would be done if needed later and he said that my prostate is too small for TULSA again, but several other types of ablation would be options.

For now we are sticking with 3 month PSA and MRI and biopsy in a year as originally planned.

So I guess I am still happy with TULSA and feeling good about my situation.

I asked about the PSA 0.54 being flagged and he said it was a mistake and he is happy with PSA.

 

[Koolau]

Thanks for the info joesm3. I guess for most of us guys, if we live so long, we'll be making decisions along these lines. Not looking forward to it and just now worrying about BPH. Tamsulosin is very helpful but I can tell I'll need to up the dose before too long.

Doctor and I have "agreed" to cease PSA testing due to the issues of false positives. I'd be interested in guys' thoughts on that decision. I'm just shy of 78. Last PSA test was good. My PCP says I'm "relatively healthy" though I have plenty of stuff "wrong" with me. His subtle reminder is that it's more likely something else will get me first. I'm still processing that after a year. YMMV

 

[joesxm3]

I think PSA should be monitored but only as a trip wire.

If the PSA rate of change increases I think that MRI or one of the newer chemical tests should be the next step rather than immediate biopsy.

My cousin and my former pastor both were not monitored and had huge PSA when detected, near 50. My cousin had cancer into his bladder and is a mess. My pastor had 50 doses of radiation and is ok now.

I was shocked when I heard their doctors let them get to 50.

But it is true that you don't want to overreact to PSA.

I went from 2 to 4 and was just monitoring. Then I jumped to 10 which triggered action.

 

[joesxm3]

Oh, I just noticed you are 78 with a good PSA. Your doctor may be right that by the time prostate cancer develops enough to matter something quicker will have gotten you.

My prostate PET/CT mentioned coronary calcium and I followed up with cardiologists. That is probably more of a worry for me. The leading cause of death for prostate cancer patients is heart disease.

 

[Koolau]

Yeah, I've always been one to look ahead, be tested, take the meds and vaccines the doc gives me, etc., etc. So NOT being tested was anathema to me. But my local PCP explained it pretty well. Unless I got some "galloping" version of PC, a high PSA test would likely lead to more issues than it would solve - such as biopsies and maybe other stuff which could be more dangerous than a slow growing PC. But, honestly, I'm still conflicted.

Heh, heh, I have a PCP on the mainland since I spend months there each summer. He went ahead and ran PSA on me with all the other tests this past summer and the result was still good. Mainland PCP and I had NOT had "The Talk" about PC and PSA testing.

Now I'm feeling "guilty" and I haven't informed my local PCP of the test result. I almost feel like I've "cheated" on my local PCP. Next year, I'll initiate "The Talk" with my mainland PCP and see what HE says (heh, heh, if I live so long.)

 

[aja8888]

Thanks for the info joesm3. I guess for most of us guys, if we live so long, we'll be making decisions along these lines. Not looking forward to it and just now worrying about BPH. Tamsulosin is very helpful but I can tell I'll need to up the dose before too long.

Doctor and I have "agreed" to cease PSA testing due to the issues of false positives. I'd be interested in guys' thoughts on that decision. I'm just shy of 78. Last PSA test was good. My PCP says I'm "relatively healthy" though I have plenty of stuff "wrong" with me. His subtle reminder is that it's more likely something else will get me first. I'm still processing that after a year. YMMV

I'm kind of like you as my PSA tests have historically ranged between 0.5 and 1.0 for over 15 years now. I take Tam and it works pretty well for an 81 year old. My doc told me not to worry unless something really changes. Oh well...should I be worried about something?

 

[Koolau]

I'm kind of like you as my PSA tests have historically ranged between 0.5 and 1.0 for over 15 years now. I take Tam and it works pretty well for an 81 year old. My doc told me not to worry unless something really changes. Oh well...should I be worried about something?

Heh, heh, suddenly I'm picturing Alfred E. Neuman. "What, Me worry?"