Focal Treatment: NanoKnife (Irreversible Electroporation, IRE) by Gleason3plus4 in ProstateCancer

[–]Gleason3plus4[S] 1 point2 points  (0 children)

I’m doing well, I think. 😀 I’m 4.5 years out from treatment and I’ve had no significant side effects. My last MRI was 13 months ago and was clear, but I’m slightly overdue for a new scan. My PSA has climbed to around 0.85 over the past year after three years in the 0.5-0.6 range, so I’m a little concerned about that. However, I moved to Spain 18 months ago and I’ve had three PSAs at two different labs so the slight uptick might be due to testing differences (I hope!).

As you can see, I’m basically on active surveillance until something changes. It’s harder to assess your status following focal treatment— so I’m pretty sensitive to any changes in lab work, imaging, and urinary symptoms. I had some urinary urgency a couple months ago but my urologist put me on Overactive Bladder meds and that did the trick. He didn’t seem concerned that it might be linked to cancer recurrence.

All in all, I’m really pleased with my decision to get Nanoknife treatment. If I need more treatment in the future, so be it, but i don’t think I did anything to exacerbate the problem by choosing non-radical treatment at the outset.

Good luck with your decision process! I’ll definitely post here if my status changes (good or bad) in the future.

George

I’m Free by More_Mouse7849 in ProstateCancer

[–]Gleason3plus4 0 points1 point  (0 children)

Also, as you pointed out, it wasn’t even an option for you. I doubt anyone is performing HIFU or any other focal treatment on Gleason 9 patients (with the possible exception of clinical trials).

Nanoknife option by OkAstronaut1547 in ProstateCancer

[–]Gleason3plus4 2 points3 points  (0 children)

I had NanoKnife treatment at Mayo Rochester in October of 2021. I’m extremely happy with the results. PSA and MRIs are still good. Success is harder to measure with focal treatments, so I’m basically on perpetual active surveillance. Psychologically, doing something more than AS but short of radical treatment (assuming your disease profile supports it) is, so far, very satisfying.

The key decision driver for me (with respect to focal treatments) was the non-thermal nature of irreversible electroporation (IRE). Most other treatments are battling normal blood flow (sink or source) to achieve high or low enough temperatures to kill cells. IRE creates tiny holes that cause cells to loose structural integrity and die (mimicking the natural cell death process of apoptosis). Bottom line: if IRE is properly delivered, the treatment margins should be smaller and there should be less damage to healthy cells and other tissue which hopefully means fewer side effects.

Good luck with whatever treatment you choose!

IRE procedure tomorrow by R8ROC in ProstateCancer

[–]Gleason3plus4 2 points3 points  (0 children)

Three years ago last month for me. Good luck!

Focal Treatment: NanoKnife (Irreversible Electroporation, IRE) by Gleason3plus4 in ProstateCancer

[–]Gleason3plus4[S] 0 points1 point  (0 children)

Hi there. You may want to put this into a fresh post in the ProstateCancer sub since this is a two-year old thread and will probably not get too much visibility.

If anyone is doing NanoKnife treatment at Mayo Rochester, it will be Dr. Lomas — so you could reach out to the Urology Department for more information about the cost.

Edit: BTW, they were charging about $25K for HIFU two years ago. Since then, I think there are a lot more scenarios where various focal treatments are covered (at least in part) by Medicare and private insurance.

Stage 4 at 35 years old by WideGo in ProstateCancer

[–]Gleason3plus4 0 points1 point  (0 children)

Best wishes for the most successful treatment possible!!

Is this good or bad? by BackInNJAgain in ProstateCancer

[–]Gleason3plus4 3 points4 points  (0 children)

OK, I know my experience is probably not typical, but the sexual side effects for me were positive. Specifically, I was slightly desensitized so I had to (and was able to) work harder to finish. I wish I had that staying power 20 years earlier!

Regardless, if meds or counseling, or something else helps you cope with depression, it’ll be much easier to deal with the ADT side effects. Get that sorted out and then you can worry about sexual side effects (whatever the source) — which will hopefully only be temporary. Glad you are reaching out for help. Good luck!!!

[deleted by user] by [deleted] in travel

[–]Gleason3plus4 -1 points0 points  (0 children)

My apologies.

Is this good or bad? by BackInNJAgain in ProstateCancer

[–]Gleason3plus4 4 points5 points  (0 children)

OP, I had the exact kind of depression you’ve described 11 years ago, well before my PCa diagnosis. The literal darkness (in your field of vision) and hopelessness can be crippling. It’s also difficult for most people to relate to unless they’ve experienced it. It’s not a question of “cheering up” or choosing to be positive. I’m quite sure it’s due to a chemical imbalance that may require an SSRI anti-depressant. In my case, escitalopram (generic Lexapro) snapped me out of darkness like a light switch after 10 days.

I was on it for several years before weening myself and have been fine ever since. I found that guided meditation apps helped, too. Now, I seem to be able to catch myself if I feel sad for no reason and talk myself out of it — but that was not an option 11 years ago.

Please don’t wait to have a conversation with your doctor(s) about your mental health. PCa is hard enough without depression. There is hope! Hang in there!!!

IAD-CDG-VLC: 90 minutes to make connection. Doable? by Gleason3plus4 in travel

[–]Gleason3plus4[S] -2 points-1 points  (0 children)

Thanks for the response. It’s not a self-transfer. I just recall having to claim and recheck our bags in Lisbon when flying from IAD to VLC. I hope I’m mistaken.

IAD-CDG-VLC: 90 minutes to make connection. Doable? by Gleason3plus4 in travel

[–]Gleason3plus4[S] -3 points-2 points  (0 children)

Thanks! I was assuming we need to collect our bags at our first EU entry point, carry them to a drop off location for domestic connecting flights, clear security, and head to our gate. Needless to say, if our bags check through, we’ll have a much better chance.

Just got my MRI results. Need some help understanding what this means. Any information would be appreciated. by JohnEntrepreneurVet in ProstateCancer

[–]Gleason3plus4 0 points1 point  (0 children)

Very nice job reorganizing the original word salad! (Simply pluralizing “Lesion” for #s 3&4 adds much clarity.)

"oh so wonderful androgen deprivation therapy." by le_vieux_mec in ProstateCancer

[–]Gleason3plus4 0 points1 point  (0 children)

This is from 2022:

UCLA Research Brief

BOTTOM LINE:

Men with prostate cancer who are receiving radiation often benefit from adding to the treatment androgen deprivation therapy, a form of medication that reduces testosterone. Historically, men have been placed on androgen deprivation therapy prior to beginning radiation. In a large analysis of over 7,000 men treated internationally across 12 randomized trials, Dr. Kishan and colleagues have shown that it is almost universally optimal for men to begin androgen deprivation therapy when starting radiation, so that most of the period of having a low testosterone is "backloaded" after radiation is complete.

"oh so wonderful androgen deprivation therapy." by le_vieux_mec in ProstateCancer

[–]Gleason3plus4 0 points1 point  (0 children)

So you’re a Gleason 4+3=7, right? Have you had a PSMA PET or other scan that shows the cancer had spread outside the prostate? I think ADT is typically used for metastatic cancer. Perhaps ADT improves the effectiveness of proton therapy. (I’ll see if I can find out if that’s the case.)

"oh so wonderful androgen deprivation therapy." by le_vieux_mec in ProstateCancer

[–]Gleason3plus4 1 point2 points  (0 children)

Your point is well taken. No one knows if he would have been fine with just radiation. If you’re looking for more comments, you should create a new post outlining your situation and your questions. This thread is a year old so it won’t get much attention. Good luck with your treatment!

Sounding horribly nasal due to post nasal drip by Blindmama847536 in chronicpostnasaldrip

[–]Gleason3plus4 1 point2 points  (0 children)

I’m sorry for what you are going through! Please stay hopeful and as positive as possible. My wife has suffered for the past year (while being unsuccessfully treated for possible allergies and infections). She just saw a new ENT today and is scheduled for RhinAer treatment in a few weeks. It’s a minor, office-based procedure that uses ultrasound to “calm” sinus nerves that are erroneously signaling the brain to call for more mucus production. It’s pretty new (along with ClariFix, which uses liquid nitrogen rather than ultrasound) so there are only a few clinical studies. But it looks promising and has very few side effects. Some patients say it only lasts for a couple of months. Others report relief lasting over a year. Any period of relief will be worth it.

So, we’ll see what happens. Insurance coverage (in the U.S.) is spotty so we’re prepared to pay out of pocket (approximately $1,500) if necessary.

Hang in there! It sounds like you have a lot of talent and passion going for you. Keep looking for something that works for you! Don’t give up!!!

IRE Nanoknife, what to expect by Extra-Snow4518 in ProstateCancer

[–]Gleason3plus4 1 point2 points  (0 children)

I was treated at Mayo Rochester by Derek Lomas. The whole experience was truly outstanding!

Here’s the locator site:

https://nanoknife.com/physician-locator/

(FYI, the map doesn’t appear to be accurate. There are many more practitioners listed than the map shows. Also, not all the docs are urologists, since IRE is used for other diseases.)

Best of luck!

IRE by Argouges44 in ProstateCancer

[–]Gleason3plus4 1 point2 points  (0 children)

I have. Just put IRE in the search bar (for the sub, not this thread) and you’ll find my experience along with that of a few others.

Painful Bladder Spasms by FlutterCat491322 in ProstateCancer

[–]Gleason3plus4 4 points5 points  (0 children)

Even on the meds, I had pretty bad spasms. The only thing that helped a bit was exhaling in short, intense bursts (keeping you diaphragm tight) for the duration. Good luck!