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Prostate Cancer Treatments that DO NOT have a Erectile Dysfunction Side Effects !!

JWS13 profile image
35 Replies

Does anyone know of any LEGITIMATE Prostate Cancer Treatment other than Active Surveillance or Watchful Waiting that does NOT have an Erectile Function Side Effect???

(i.e. Focal Therapy , Tulsa, Hybrid, Trial , Hifu, Cryoblation, .. Radio Frequency, Anywhere , Anyplace in United States)

(Have Gleason 7 (4 +3) . 6 months out from Diagnosis-PSMA PET -Cancer still in Capsule in Right & Left mid-gland).

Thanks ..appreciate all responses in advance!!

(Please NO Homeopathic, Cannibus, Non FDA Approved Treatment therapy!)

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JWS13
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35 Replies
Tall_Allen profile image
Tall_Allen

I had SBRT and had no ED from it. The focal therapies are not FDA-approved to eliminate prostate cancer, just prostate tissue.

JWS13 profile image
JWS13 in reply to Tall_Allen

TA..which doc and medical center did you use? sounds like you made a good choice!

Tall_Allen profile image
Tall_Allen in reply to JWS13

Chris King at UCLA, but he is no longer there. I think Amar Kishan is just as good (he was mentored by Chris King).

Cooolone profile image
Cooolone

Pwr Dr. Mulhall, a leader in Sexual Health Oncology who is affiliated with MSKCC has proclaimed that 50% of patients will never return to pre-treatment function, REGARDLESS of therapy chosen.

The correct question then might be are there ways to "mitigate" that possibility!?

Yes, indeed there is/are...

#1 is getting to a Major Cancer Center and one rated in Excellence! Getting a Top Oncologist to provide your care and have the very best team in your corner that you can access! Period!

Disclaimer: I am a patient of Dr. Mulhall, and I will attribute my wonderful recovery and sustained function both sexual and continence wise to the expertise of those doctors I have selected to provide my care. I met and consulted with many prior to first line therapy, and second, third... And thanking them all & God, I'm still doing pretty good! Was almost completely dry a few months post RP, and sexual function without aid, but much better with!

Again, seek out the best, and get the best care and results!

Good Luck and Best

MrFireworks profile image
MrFireworks in reply to Cooolone

Two videos I found of interest; one is Dr. Mulhall:

youtu.be/4ELsojPFNV8

another is the PCRI.org 2022 virtual conference Day 1 video at 2:37:55 about ED and incontinence and what can be done about it.

CarverD profile image
CarverD

I received HDRBrachytherapy in October 2020 and have had no ED or incontinence issues of any kind from day one. Choosing the best doctors with the most experience is your best course of action.

JWS13 profile image
JWS13 in reply to CarverD

Carver..who were your docs and what facility? thanks- sounds good

MrFireworks profile image
MrFireworks in reply to JWS13

Keep in mind that ED may develop later for RT.

While the RT side effects appear to be less severe than for RP, so far I'm not seeing any 100% guaranteed results, and I hope I would know better than to believe any such claims without scrutiny. Dammit.

NYC_talker profile image
NYC_talker in reply to MrFireworks

Yes. I was told that how ever you are before radiation -- in terms of erectile issues -- you come out the same or slightly less. It's possible it would have an affect over time, but many see no difference. Everyone is different.

I had 27 sessions of IMRT in 2019 and have had no ED issues. I did not have any ADT afterwards either.

JWS13 profile image
JWS13 in reply to

where did you have the imrt and what doctor? thanks

in reply to JWS13

I had it done at Lykes Radiation Pavillion in Clearwater Florida. It is attached to and part of Morton Plant hospital. The doctor I had was from Moffitt cancer center in Tampa. I looked at all the radiation doctors for Moffitt and Lykes and I don't see his name so he probably left to go elsewhere. I heard that he had come from another center outside of Florida. I would not use Lykes again for any treatment. It's a teaching center and your privacy goes out the window there.

MrFireworks profile image
MrFireworks in reply to

It's a tradeoff: supposed to be the best care at teaching and research centers (they want the best doctors teaching, and are seeking better treatments vs. maybe milking the equipment they have), vs. privacy.

I had an additional attendee at my biopsy; thinking of it as getting caught up on the mooning I never did in junior high school. 😜

in reply to MrFireworks

This was different. It was not professional at all and there were no doctors involved with the actual radiation process. It was mostly female radiation techs and it was like a game to them.

MrFireworks profile image
MrFireworks in reply to

That sounds highly inappropriate. I can I imagine what would happen had the sexes been reversed. I hpe you reported it to the administration.

in reply to MrFireworks

Oh yes, when I had my so called exit interview, I let them have it. On the first day of radiation, the lead tech said to strip down completely on the bottom and grab a towel. On the second day, she tells me I didn't have to strip completely, to leave my underwear on. I thought to myself, what the hell was that about? Then, when I would first get on the table and they were adjusting me and wanting to be able to see my dot tattoo just above my pubic hair, they would yank my underwear down sometimes exposing my privates. One day, one of the students was being observed by the trainer from her school. The person at the control center ran the program to get the table aligned with my side tattoos but the pubic tattoo was off a bit. The student was instructed to adjust me so that tattoo was aligned. Instead of grabbing the sheet under me and tugging on it like the other techs did, she puts her left hand right on top of my package and her right hand on my hip and starts trying to push me. Needless to say, I was a little bit shocked. At the end of each week, I had to meet with a lead nurse and then the doctor. I mentioned to the nurse one time that I had Wegener's disease and do a lot of research online. She made a snide remark about me trying to be Dr Google. I was really upset with that place.

cybertreated2019 profile image
cybertreated2019

I was treated with SBRT in 2/19 for 3+4 PC. Zero sexual side effects. But there are things you can do to help your outcome with any course of treatment. Read a lot about your course of treatment and what worked for others. For me that meant low dose cialis during and for 90 days post treatment. Seemed to work and helped BPH symptoms so much I still take it. Get or stay as fit as you can and sleep well

JWS13 profile image
JWS13 in reply to cybertreated2019

cyber, which doc and medical center did you use? sounds like you made a good choice!

Having had TURP surgery 10 years prior to my diagnosis I wasn't a candidate for RP, which I considered too invasive anyway. I was steered toward radiation. 5 cores positive, right side of prostate. I went with full gland, not focal, HIFU. That was six years ago. No ED, no incontinence. If you go this route chose an experienced practitioner.

Jpl506 profile image
Jpl506

SBRT here, no side effects so far.

JWS13 profile image
JWS13 in reply to Jpl506

.which doc and medical center did you use? sounds like you made a good choice!l

Jpl506 profile image
Jpl506 in reply to JWS13

Dr. Amar Kishan UCLA, one of the first ViewRay patients. I made a choice that I determined was best for me, everybody has to do the same for themselves and it’s not always easy. Especially when you’re still coming to grips with the diagnosis. I wish you luck no matter what you choose.

Adf2529 profile image
Adf2529

SBRT here. Treated at 64. Now 68. No sexual side effects. Go to a Center of Excellence with an experienced radiologist.

JWS13 profile image
JWS13 in reply to Adf2529

adf, .which doc and medical center did you use? sounds like you made a good choice!

NYC_talker profile image
NYC_talker

I had LDR brachytherapy in January of this year and it has had no negative impact on my erections. In fact, they got even better because of being on daily low-does cialis, which I started just before treatment and which is aimed at keeping blood flowing down there post-radiation.

JWS13 profile image
JWS13 in reply to NYC_talker

.NYC...which doc and medical center did you use? sounds like you made a good choice! NYER as well.

Adf2529 profile image
Adf2529 in reply to JWS13

I had mine SBRT at UCLA. If you are in the NYC area, I’d recommend Dr. Zelensky consultation at Sloan Kettering.

JWS13 profile image
JWS13 in reply to Adf2529

Who did you use at UCLA..Steinberg or Kishan? Did you have spaceoar?

in reply to JWS13

JWS13. I had the SpaceOAR procedure and I can tell you it's worth having it done. Try to picture this in your head. The gel they inject sits between your prostate and your rectum. The radiation machine moves 360 degrees around you as you lay on the table. When the machine is above you at 12 o'clock, the SpaceOAR provides some protection to your rectum. But as the machine starts rotating around you, there is no SpaceOAR protection any longer. My Urologist told me "it's a money thing" and he didn't recommend it but I had it done anyway because I did not know about the radiation process and how it worked.

in reply to

I meant to say it's "not" worth having it done.

NYC_talker profile image
NYC_talker in reply to JWS13

Memorial Sloan-Kettering. Dr. Shasha. Just know that, as others have said, everyone is affected differently, and there's no guarantee with any treatment.

Piano777 profile image
Piano777

Look into NanoKnife IRE focal ablation. I had Gleason 7 (4+3) and had IRE ablation through a clinical trial. Outpatient procedure with zero incontinence and no ED afterwards. PSA down from 5.76 to 1.21 and clean MRI 6 months after procedure.

Nanoknife has been around for 10+ years for other tumors and is doing clinical trials to be approved to say it is for prostate tumors as well.

The main advantage over other methods (basically some form of heat or cold) is the ability to tightly control the cells impacted and they die a "natural death" based on nano holes in the cell membrane

Clinical trial clinicaltrials.gov/ct2/show...

Excellent info on previous trial and incontinence and ED results: ncbi.nlm.nih.gov/pmc/articl...

These trials are across multiple levels and ages so there was some ED, but problems were correlated with lower erectile function pre-procedure.

JWS13 profile image
JWS13 in reply to Piano777

where and which doc please? any catherization?

Piano777 profile image
Piano777

Dr Amit Patel, Chicago suburbs. He is part of Duly Medical Group. Catheter for 3 days post procedure.

Check the clinical trial for multiple locations: clinicaltrials.gov/ct2/show...

rpegipto profile image
rpegipto

My husband (age 82, with both PCa and BPH) chose to get Focal Laser Ablation (FLA) since it could address both issues in one procedure. He chose Dr. Ara Karamanian in Houston. It was definitely the best choice for him: no ED and no incontinence.

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