Proton Therapy: any long term side effects? Any regrets?

@5galloncan
You mentioned bike riding. Did you have the Space/Oar done? If so asked your R/O about bike riding. I was told not to bike ride.

I went to same institution you did. My treatment was May through July in 2023. I had 30 rounds of proton radiation with the Blue Team and R/O was Dr. Mendenhall.

I got the sun burn type marks on side of hips also. But had not issues with any pain or discomfort. Did not even know the sun burn type discoloration was there until my wife mentioned it. I had minor fatique about 4 weeks in but was able to keep walking, swimming and doing water aerobics. I had more issues with frequent urination and urgency than anything else. All after treatments stopped slowly went away.

I was asked not to bike ride as can interferre with Space/Oar and also can irritate the prostate which is already under bombardment with radiation.

Electrolytes are very important to prevent cramping.

During the SpaceOar procedure, the doctor stopped for whatever reason and I ended up without it. So my 29 sessions were with the endorectal balloon. My ebike is ridden sitting up straight on a wide, cushioned seat where the pressure is not on my prostate at all. I wouldn't be riding a traditional bike where you position yourself over a medieval torture device destined to smash into your prostate. I never understood that support design for men.

@rmbagadiya, have you talked to your doctor about the bladder irritation and bleeding? It would be good to rule out something else going on with your bladder.

@5galloncan
I tried to get my R/O and PA at UFHPTI to let me ride my bike which has a similar seat to yours but even less bike seat contact with prostate. But they said no.

They did not want to do anything that might aggravate prostate and or the Space/Oar. Even with sitting on abbreviated seat you still have a lot of pressure going downward that you don't' have sitting on a chair, etc.

I saw many coming after me with techs getting the balloon ready. Did you have the urologist from Shands come in to do the Space/Oar? They did my Space/Oar at same time they did markers.

Having to drink all that water prior to radiation I am glad I did not have the additional time to put the balloon in. UFHPTI are professional experts on proton radiation treatments and have been doing treatments there since 2006. You and I were in good hands.

The same doctor doing the markers attempted the Space/Oar, but for some reason having to do with getting blood pushing back into a syringe more than he wanted to see, he canceled the Space/Oar. I didn't get any more detail on this. The balloon only adds a minute or two to the procedure, so no concerns there.

From an AI inquiry about how the endorectal balloon works:

Key points about how an endorectal balloon works:

Positioning:
The balloon is inserted into the rectum and inflated, pushing the rectal wall away from the prostate, creating a barrier between them.

Reduced radiation dose:
By increasing the distance between the rectum and the radiation source, the balloon significantly reduces the amount of radiation that reaches the rectal tissue.

Improved treatment accuracy:
By stabilizing the prostate's position, the balloon helps ensure that radiation is delivered precisely to the target area, further minimizing unnecessary exposure to surrounding tissues.

I agree with Colleen Young. You should check this out. Not to worry you, but do insist on further inquiry about the bladder in case something new is going on that you want to catch and treat as early as possible.

Went to Loma Linda University Medical Center in 2012 for Proton Therapy for Prostate cancer. Alive and well!

Zero side effects, no recurrence so far. Hard to see that there would be, I'm 77 years old and in excellent physical health. It was by pure accident that I discovered I had prostate cancer and I've no idea when it might have started since I hadn't seen a doctor before I was diagnosed for some time. My father also had it and he lived to be 89 (2006), he got the chemical treatment in the UK.

Great to hear that, what about ED, incontinence, and dry orgasm?, no need for any medications.
What’s your current PSA level?

There are a number of reasons why they might have stopped. From the literature, it’s usually due to operator error:
> The SpaceOAR needle tip must be at the prostate midline during SpaceOAR hydrogel injection to avoid lateral hydrogel formation. In the US Clinical Study incorrect hydrogel placement was observed in 0.7% of subjects.
> The SpaceOAR needle should be inserted under ultrasound guidance to maintain needle tip visibility and prevent rectal wall penetration. In the US Clinical Study inadvertent rectal wall needle penetrations were experienced in 1.4% of subjects.
> SpaceOAR System injection should proceed uninterrupted, without stopping. Stopping during injection may result in device plugging.

But, sometimes due to anatomy:
> The perirectal space may not open during hydrodissection, e.g., scar tissue. If the perirectal space does not open with saline do not inject SpaceOAR.

It’s good that they were cautious.

I agree. I suspect that the perirectal space opening procedure with saline may have been the issue as there were comments being made while I was lying there about getting blood in the syringe as to why he aborted the procedure. From an online search:

"Search Labs | AI Overview

"In the context of the SpaceOAR procedure, opening the perirectal space with saline, also known as hydrodissection, is a crucial step. It involves injecting a small amount of saline into the space between the prostate and the rectum to create a cushion. This allows the physician to visualize the correct location for the subsequent injection of the SpaceOAR hydrogel and confirm that the needle is in the proper position before injecting the gel.

"Regarding blood in the syringe:

"Potential issue: While not explicitly mentioned as a routine occurrence, finding blood in the syringe during the SpaceOAR procedure would be a concern. It could suggest that a blood vessel has been inadvertently punctured during the needle insertion, potentially leading to bleeding.

"Importance of hydrodissection: Hydrodissection with saline is important because it helps to separate the tissue layers and confirm proper needle placement, which can reduce the risk of puncturing a blood vessel or other structures like the rectal wall, bladder, or prostate.

"What to do: If blood is seen in the syringe during the procedure, the physician would likely need to stop the procedure and assess the situation to ensure patient safety.

"Note: It's important to remember that procedures like SpaceOAR, while generally safe, carry some risks, and it's essential for the medical team to be prepared to handle potential complications."