Starting Proton Treatments for Prostate Cancer: Any experiences?

Would also take 1 during the night for a total of 6 each day. Ron

I had same issue but occurred later in process. Radiologist said it’s from inflammation of the tissue caused from radiation. Take advil or another NSAID like Advil. It helped me quite a bit but didn’t totally solve the issue. I would take 1 every 4 hours during the day. ( You have to take a lot over a long period of time to damage kidneys so I didn’t worry about taking it for 2 months or so) Problem went away about 3 weeks after treatment completion)

I had similar experience during Proton Beam treatment. It was a strange "pain" or discomfort and then slow urination. Spoke with oncologist and well as urologist and it was suggested that inflammation of the prostate can cause these symptoms. It can also be impacted by the SpaceOAR hydrogel which was injected to reduce potential damage to rectum. Symptoms started to recede after 3 1/2 months and are now largely gone. It was recommended that I take ibuprofen to reduce inflammation. This seemed to help. These symptoms are uncommon but I have heard of many experiencing them.

To get the relief from the urinating pain by going to urgent care and they can give a prescription. You probably don't need your radiation oncologist to prescribe it.

I didn't have pain during the radiation but did have pain when I started to urinate 5 days after we started, but I was warned that it might happen because the muscles in the urethra would get radiated. As soon as it started, they gave me Flomax that took care of the problem. I would suggest you contact them now to get a prescription. The other thing is he may have urgency when he feels to go. He can hold it awhile but not normal and it will also go away. If he hasn't discussed this, they should give him more information. I also had Lupron for 18 months with its own issue that are much worse than the radiation. Good luck to him. The radiation was a lot less side effects than friends who had surgery.

My husband just started his radiation treatment, his 3rd session he is having extreme pain waiting for pee to come, after peeing, pain still there for several minutes. It’s Friday, won’t see dr. Til Tue

The injection of SpaceOAR is less painful than a biopsy. If you experienced only minor discomfort with biopsy, you will need no anesthesiology other than the lidocaine which is administered just prior to injection of SpaceOAR. At least this was my experience at Mayo Clinic Rochester.

I did not feel the SpaceOar as my urologist insistent that I be knocked out. His buddy must be an anesthesiologist and needed to make a mortgage payment even though he did my 30 core transperienal biopsy and knew I didn't flinch once. I am still pissed about it. I did not even notice anything after the procedure and the ficuidal marker placement. SRBT is the very high dose 5 radiation treatment weather it is proton or photon.

Good information. I am having the proton treatment also but at another provider. The side affects you mentioned were given to me as side affects and "normal" during and after the treatments.

When you had the SpaceOar did you feel it? Mine is pronounced and can feel it. It is just like they said feels like you need to take a BM. Mine seems to have leveled off but quite noticeable.

What is the SRBT? What I have is the pencil treatment and 6 weeks. I did have the Decipher, biopsy, MRI, Pet Scan, bone scan. When Decipher came back the oncologist at first consultation said was in contrast to biopsy as Decipher said "low risk" and biopsy said intermediate risk.

Thanks rockin2047, Regarding my urologist I asked I start seeing him again AFTER my treatment was over at the other provider. He did not want to do that since I had radiation at another provider. I asked another provider what they say when individuals come to this provider from another country. Or another state. Do they tell them can't see them since had radiation somewhere else. It was not for during treatment or follow up, rather later just to have monitoring of this and other conditions. I expected if thought connected to treatment at other provider I would be referred back to them. But for all other things and second opinons would be seen like I have been seen by my main provider. .

This same provider is where I went for second opinions for ICD/Pacemaker surgeries and there was NO problem seeing or giving me second opinions. And they asked me to have a cardiologist/electrophysiologist coordinate with them if I chose them for surgery.

Regarding your proton treatments. The proton is special radiation that does not have significant incoming or exiting radiation. It is designed to release radiation at the tumor or cancer area. It has little or no exit radiation beyond the cancer area. It is why I chose it above the standard radiation treatment the other provider offered. What got me was the comment at standard radiation was, "Any secondary cancers caused by this treatment would not have to be dealt with until 10 years."

I have had no side affects yet. The only issues I have had are trying to hold the water you have to drink and facing any delays. I have to drink 16 oz of water 30 minutes prior to treatment. That is fine and can hold it but any delay I am in misery. I am in my second week and so far other than the space/oar feeling wierd no change.