Going for Tulsa Pro Jan. 7th

Posted by paulcalif @paulcalif, Dec 29, 2024

I've posted here a few times over the last year and have read most of the posts from others. I was diagnosed in January 2024 through an ultrasound biopsy (it should have been MRI guided), followed by a PSA test CT scan, MRI, and Decipher test. My cancer is not aggressive, but there are three growths in my prostate. My doctors recommended a full ablation, and I’ve decided to go with the Tulsa Procedure at UCLA with Dr. Steven Raman.

I’ve waited until now because I believe Medicare will begin covering the procedure on the 1st. of 2025. Earlier this year, I switched from a Medicare HMO plan (Blue Shield) to Original Medicare with a supplemental plan, where Medicare covers 80% and the supplemental plan pays the remaining 20%. It’s been incredibly difficult to determine whether Medicare will actually cover the procedure, as I’ve received conflicting information. However, I think they will.

I considered going back to an HMO with United Health Plans, which includes UCLA physicians as in-network, but no one could guarantee that they’d cover the procedure either.

Anyway, I thought I’d document this journey. It begins on January 5th, when I’ll check into an Airbnb hotel near the procedure location. This is two days before the procedure. I’ll have to fast those 2 days and completely empty my stomach (I’ll spare you the details). In the best-case scenario, I’ll wake up with a catheter and a “burned out” prostate. I’ll need to wear the catheter for at least two weeks. Hopefully, they'll get it all 🙂

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@monkee

I live in Orlando but I am looking at the TULSA procedure and Mayo Jacksonville. Can you please share your experience there so far? How long you waited to get an appt and who you saw there?

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My apologies, I just saw your post. I have been approved now for the procedure and met with the doctor Ram Pathak, M.D. I asked if I wanted to schedule how soon they could do the procedure, he said like 3 weeks. They may have more scheduled now that it is a covered procedure. I had to do a ct pelvis scan to rule out calcium deposits, he said if there is any that he cannot do the Tulsa, I just finished the scan and it is clear. I am on a diet, I am overweight, so losing some weight before the procedure so that recovery will be easier, I will be scheduling soon. I really love mayo, there has been no other hospital better. They value you, and value your time, they spend all the time with you that you need and answer all questions so that I understand. Let me know if I can answer any more questions, please contact me.

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It's been 2 weeks today post procedure and 1 week post catheter removal. No observable tissue and little to no blood in urine. Flow has greatly increased but still less than pre-procedure. My fear was that I would be fully obstructed and end up in the emergency room, but thankfully that never happened. I hope our posts here help alleviate apprehension and fear of future Tulsa Procedure patients. If I had seen these posts before my procedure, I would have been better prepared to anticipate the stages of recovery. The good news is, that less than two weeks out, I was feeling much better, and now I'm 90% back to normal. No pain, 80% flow.

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Question for the guys who have already had the procedure. On Tuesday I'll be 4 weeks post procedure and 3 weeks post catheter removal. I'm wondering if my recovery to this point is typical. My urine stream is better than right after catheter removal but not as good as pre-procedure. I'm still getting a splash of blood when I first start my stream, but it clears up with a second or two. The last bit of voiding slows to a dribble/drips. I'm taking .4mg flowmax and 1mg Terazosin twice a day. I experimented with 2 does of Flomax a day but it didn't seem to make much of a difference. I feel like I've reached a plateaue. If it is getting better, it's so slow that it's not noticeable. I'm a little paranoid given the fact that they used a malfunctioning Tulsa probe at first then removed it and inserted a functioning one. I'm worried that either they may have ablated an area of my prostate that they didn't intend to ablate and/or caused extra trauma due to having to insert 2 probes. Anyway, very interested in hearing about your recoveries. I realize we are all different but still would like to hear from you. I haven't found much online.

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@paulcalif

Question for the guys who have already had the procedure. On Tuesday I'll be 4 weeks post procedure and 3 weeks post catheter removal. I'm wondering if my recovery to this point is typical. My urine stream is better than right after catheter removal but not as good as pre-procedure. I'm still getting a splash of blood when I first start my stream, but it clears up with a second or two. The last bit of voiding slows to a dribble/drips. I'm taking .4mg flowmax and 1mg Terazosin twice a day. I experimented with 2 does of Flomax a day but it didn't seem to make much of a difference. I feel like I've reached a plateaue. If it is getting better, it's so slow that it's not noticeable. I'm a little paranoid given the fact that they used a malfunctioning Tulsa probe at first then removed it and inserted a functioning one. I'm worried that either they may have ablated an area of my prostate that they didn't intend to ablate and/or caused extra trauma due to having to insert 2 probes. Anyway, very interested in hearing about your recoveries. I realize we are all different but still would like to hear from you. I haven't found much online.

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I worked medical devices a lot of my life, and on experimental ones in medical research (never in urology), but taking the probe out and in, is unlikely to have anything to do with an ablative process that is done with an ultrasound beam. The beam is the process. The taking in and out is a mechanical unfortunate event, but unlikely to to have contributed to much of any issues, maybe small or something that quickly healed. Some small tissue scrapping or who knows but probably not a real lot of issue, this is fast regrow tissue so that would be gone now.

I had a ton ablated but it is a ton of tissue in there that will take 6 months to reabsorb. You have a bunch of tissue that takes time to absorb. 6 months come back and ask some of these questions, you will likely be fine till then. I was about the same as you at this stage, so I think no concerns. I wanted off alpha blockers and did get off at two months since I don't like them, but to be honest I could have taken them much longer.

Now the thing is if BPH was active and prostate enlarging prior - that is still in place. I am finding that out. My MRI shows no concerns for cancer but my BPH is still active. So I am changing my diet and stuff to arrest the BPH in its tracks, but you will have to find out if that plays into it at all because it can slow down things again if one doesn't get ahead of it.

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Thanks for the reply, that's reasurring. I know all about how Tulsa works, what I didn't mention was that when they were ablating with the bad probe, they weren't getting the correct feedback, so I assume they were ablating without fully knowing how much they were ablating. I did also have concern that about them having to insert the probe twice, so hearing from you has alleviated that fear. I had BPH prior to Tulsa too. I was really hoping that since an enlarged prostate causes BPH, that having some or most of it ablated would relieve the swelling and in turn solve the BPH issue. I asked my doctor about that and he said it might. I've been taking Terazosin for several years for BPH with no side effcts, So I guess I cant expect miracles. Knowing that you had similar symptoms is a relief, thanks for posting! I'll stop worrying about it. I knew the tiny amount of blood coming out wasn't serious, but I was wondering how long it would last. Thanks again 😀

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@bjroc

I worked medical devices a lot of my life, and on experimental ones in medical research (never in urology), but taking the probe out and in, is unlikely to have anything to do with an ablative process that is done with an ultrasound beam. The beam is the process. The taking in and out is a mechanical unfortunate event, but unlikely to to have contributed to much of any issues, maybe small or something that quickly healed. Some small tissue scrapping or who knows but probably not a real lot of issue, this is fast regrow tissue so that would be gone now.

I had a ton ablated but it is a ton of tissue in there that will take 6 months to reabsorb. You have a bunch of tissue that takes time to absorb. 6 months come back and ask some of these questions, you will likely be fine till then. I was about the same as you at this stage, so I think no concerns. I wanted off alpha blockers and did get off at two months since I don't like them, but to be honest I could have taken them much longer.

Now the thing is if BPH was active and prostate enlarging prior - that is still in place. I am finding that out. My MRI shows no concerns for cancer but my BPH is still active. So I am changing my diet and stuff to arrest the BPH in its tracks, but you will have to find out if that plays into it at all because it can slow down things again if one doesn't get ahead of it.

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Would you please share what you're doing regarding diet and arresting BPH in it tracks? I expect I may need to investigate this approach. Thank you.

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@pdcar4756

Would you please share what you're doing regarding diet and arresting BPH in it tracks? I expect I may need to investigate this approach. Thank you.

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Well there isn't probably one cause of BPH.

I will say 5-alpha reductase inhibitors prescriptions (dutasteride and finasteride) and OTC supplements that have essentially low dose 5-alpha reductase inhibitors will work plus lower PSA, but it covers up the issue so that doesn't solve things BPH wise.

Several proposed things that cause BPH are for one a testosterone to estrogen ratio below 10 which would be a direct cause. I have posted what can be done prior if you have those tested and it isn't ten or higher. I will post it below.

Another cause of BPH is inflammatory foods or ones that are prostate inflammatory, and that is complex to tackle as it may differ by person, and some very different opinions on foods of course. But the general things are basic to more complex, the basic being avoid sugar and all fairly refined carbs (things like Ezekiel bread are believed ok), avoid all oils but Olive and some are ok with coconut others not - but unfortunately most prepared foods have all the cheap oils, avoid all dairy and milk. Then the complex and differing opinion ones are to avoid meat totally as it has these in it:
Heterocyclic amines
TMAO (Trimethylamine N-Oxide)
Heme iron
Neu5gc (N-Glycolylneuraminic acid )
AGEs (Advanced glycation end products )
See GameChangersMovie.com on that
So that means use soy instead of meat. Other websites avoid soy and go for meat/keto. I did meat and keto for years and still had BPH so I am now avoiding meat. Up to you what you try.

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Testosterone / estrogen ratios improvement protocol v004

Have a holistic doctor, naturopath, primary care, or other doctor order labs for you (testosterone, estrogen and progesterone) and hopefully have useful suggestions. A good testosterone to estrogen ratio for a male that is 40 or older should be around 10 and up, though it is much higher in younger men. That is 10 times more testosterone than estrogen or 10:1. If it is quite a bit lower there are some things you can do.

Symptoms of poor Testosterone / estrogen ratio in men include:

• BPH and sometimes prostate cancer follows
• Low libido
• Hair loss
• Weight gain & body fat
• Gynecomastia (“man-boobs”)
• Erectile dysfunction
• Muscle loss
• Fatigue

Things to do - knowing we are people with prostate problems including PCa.

• If PCa and BPH, don’t take exogenous testosterone (like injections) unless approved by physicians, so only work on natural was to raise the Testosterone portion of the ratio. That would mean exercise, controlling blood sugar, etc.
• Try things to lower estrogen. Some natural ways are cruciferous vegetables. Supplements include Sulforaphane glucosinolate (SGS) and DIM as these derive from cruciferous vegetables. Be sure the DIM and SGS work right for you, as they may not always do the job or an inadequate one. My experience is these don’t work that well.
• Avoid plastic touching food especially hot food, as it has “xenoestrogens” which to the body are just like estrogen. That means dump all plastic storage containers, especially older ones. Some filter all drinking water to get plastics out.
• Talk to your doctor about progesterone as it is a truly natural anti-estrogen but only if ratios are really bad. It is available OTC as well (Amazon search: progesterone USP micronized powder), but you need a very small amount daily with breaks from time to time (over a week breaks). Use a low dose suitable for men and doctors ordering labs to help (estrogen and testosterone), so it does require a doctors help for that. Trans-mucosal progesterone may produce best results. Progesterone Powder USP, Bioidentical Micronized Powder can be dissolved into tiny amounts with a measuring spoon. For men 1/64 tsp (need a tiny measuring spoon), dissolve in drops of Olive oil on a spoon, mix around with finger. Apply transmucosal or on gum area of mouth 30 minutes before bed. It will make you sleepy, just be aware of that.

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@paulcalif

Question for the guys who have already had the procedure. On Tuesday I'll be 4 weeks post procedure and 3 weeks post catheter removal. I'm wondering if my recovery to this point is typical. My urine stream is better than right after catheter removal but not as good as pre-procedure. I'm still getting a splash of blood when I first start my stream, but it clears up with a second or two. The last bit of voiding slows to a dribble/drips. I'm taking .4mg flowmax and 1mg Terazosin twice a day. I experimented with 2 does of Flomax a day but it didn't seem to make much of a difference. I feel like I've reached a plateaue. If it is getting better, it's so slow that it's not noticeable. I'm a little paranoid given the fact that they used a malfunctioning Tulsa probe at first then removed it and inserted a functioning one. I'm worried that either they may have ablated an area of my prostate that they didn't intend to ablate and/or caused extra trauma due to having to insert 2 probes. Anyway, very interested in hearing about your recoveries. I realize we are all different but still would like to hear from you. I haven't found much online.

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I wish I had kept notes! It was at least 2-3 months before my stream was back to pre procedure and I only had 30% ablated. I was ok with that as I still had full control and no pads. It is better than pre procedure these days (nearly 7 months).

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@paulcalif

Question for the guys who have already had the procedure. On Tuesday I'll be 4 weeks post procedure and 3 weeks post catheter removal. I'm wondering if my recovery to this point is typical. My urine stream is better than right after catheter removal but not as good as pre-procedure. I'm still getting a splash of blood when I first start my stream, but it clears up with a second or two. The last bit of voiding slows to a dribble/drips. I'm taking .4mg flowmax and 1mg Terazosin twice a day. I experimented with 2 does of Flomax a day but it didn't seem to make much of a difference. I feel like I've reached a plateaue. If it is getting better, it's so slow that it's not noticeable. I'm a little paranoid given the fact that they used a malfunctioning Tulsa probe at first then removed it and inserted a functioning one. I'm worried that either they may have ablated an area of my prostate that they didn't intend to ablate and/or caused extra trauma due to having to insert 2 probes. Anyway, very interested in hearing about your recoveries. I realize we are all different but still would like to hear from you. I haven't found much online.

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It's been 5 weeks since my catheter removal after TULSA and my stream is about back to normal. I was diagnosed with BPH years ago mainly because of weak stream. I think you are recovering normally. In my opinion the re-insertion of the probe and the longer time taken for the procedure probably caused more trauma and will take a week or two longer than normal.

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@bobbygene

It's been 5 weeks since my catheter removal after TULSA and my stream is about back to normal. I was diagnosed with BPH years ago mainly because of weak stream. I think you are recovering normally. In my opinion the re-insertion of the probe and the longer time taken for the procedure probably caused more trauma and will take a week or two longer than normal.

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Thanks for the reply, that's encouraging. Just now, I saw almost no blood in my urine for the first time since catheter removal. I hope it's the beginning of a trend🤞. However, I've increased my water consumption to 3-1/2 liters per day, so that may explain it too. Either way, I agree with you, more trauma may equal longer recovery but maybe not. Keep posting, it's good to see how others are progressing.

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