IMRT radiation Sep-Dec 2005 Still experiencing SE’s

[depotdoug]

Update from Doug

Adv Pca St IV. Taking Abiraterone 250 mg and Pred 5mg daily since 2019. PSA still 0.2 to 0.3mg/ml last 3yrs..

Radiated my prostate IMRT 42x’s Sep-Dec 2005. Last 6 months 19yrs later I’m having Urethral issues.

1. I self Cath 7-8 X/day. Urinary retention since July 2005

2. neurogenic bladder

3. Urethral stricture surgey Urethralplasty with buccal skin graft April 2017.

4. Urethral burning, some inflamation last 6 months.

My urologist and MO both tell me I’ve Still! got radiation products remnants and components in my body. Like in my Pelvis, urethral areas.

I never know IMRT could last 20yrs. Are there any resources to help me understand this.

Doug

[Tall_Allen]

I know someone who got a lot of relief from that from Hyperbaric Oxygen Therapy.

[depotdoug in reply to Tall_Allen]

Wish I knew what a radiation knows in 2024 vs Sep-Dec 2005. Some IMRT SE’s can be treated others may be controlled.

Might a radiation oncologist or radiation scientific pharmacologist help.

When I had my 68Ga-PSMA-11 PET/CT Aug 2019 IU Neurosciences Nuclear scientist explanned that procedure in detail and SE’ as well. But PSMA PET is with nuclear isotopes.

Thxs Tall_Allen

Doug

[Mike58 in reply to Tall_Allen]

A business acquaintance of mine here in Australia had the same issues and did the Hyperbaric therapy. He said it was a very intense program but seemed to work well.

[j-o-h-n]

20 Years? My so called urologist fucked me up also but in a different way. God help you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

[depotdoug in reply to j-o-h-n]

Well 19. 6 yrs but feels like 20+.

Latest medicine trying to heal or fix or calm my inflamation down is Amitriptyline 50mg.

Only SE that med is doing is making me sleep till 09:30 this morn. Could be a sleeping med💤

[RoseDoc]

Radiation “burns” the tissues which ultimately results in scarring. Cystitis responds well to hyperbaric treatments.

Once the tissue has scared down, such as urethra, not a whole lot can be done. Some good results with ureteroplasty but operating in irradiated tissue is like operating on concrete. It is difficult and hard to predict how the tissues will heal.

[depotdoug in reply to RoseDoc]

I found out that IMRT burns in 2015-2016 when It became difficult to self catheterize long term. I've got a Neurogenic bladder found right before my IMRT started July 2005. Summer of 2016 I could not self cath at times because I DID not know I was hitting a stricture with my catheter. I found help from my IU Health Urologists who did a Urethoplasty March 2016.

Rose Doc so I've got scared Urethral urinary skin, exacerbated by self cath'g 7-8 times a day.

I'd really like to know, really why it took so so long almost 20 yrs for my burning, irritation to bother me! Who from medical world could help me understand the "Long term side effects" of IMRT. 1) a radiation oncologist? 2) Genitourinary Onc, I'm seeing now or 3) palliative cancer support specialist.

Thanks RoseDoc

Doug

[RoseDoc]

It took so long because the wearing down and rebuilding the mucousa takes its toll over time. The skin was most likely damaged to a point by the radiation, then further exacerabated by the daily trauma of the catheter. I radiation oncologist should be able to explain it to you in more detail than I can in an internet post. He/she may also be helpful in getting you into hyperbaric treatment.

[depotdoug in reply to RoseDoc]

Yes. You make my day/mind a lot more calmer. I do a multitude of medical research mainly for my Cardiac AFIB issues, keeping AFIB into NSR since 4th cath ablation June 2022.

I will phone call my Cancer facility Oncology Navigator RN’s 1st thing In morning.!

Self cath is manageable, but knowledge of this issue needs help. Wat to go RoseDoc.

Doug