After radiation: Any advice on next steps, what to expect next 12 mos?

Which type of radiation did you get. Photon or proton?

I has low dose also but was 30 over 6 weeks (was 7 weeks due to holidays). I did not have hormone treatments of ADT so that I cannot comment on for expectations.

What I found during radiation treatments was increased urination, slowing of urine flow, greater urgency, and I could feel the Space/Oar. These symptoms slowly improved after I finished treatments. Couple of months returned to normal for me including the sensation of having the Space/Oar (it dissolves over time).

What I did to cope with increase urge to urinate was to go to bathroom when I felt mild sensation and NOT wait until urgency to do it. Over the months you will probably have PSA tests and visits with either your urologist or oncologist/radiologist to go over your symptoms and PSA results.

My wife did notice I had a dark tan on each side of my body above hips. This is where Proton Radiation usually goes in and is an expected side affect. It is tan just like you would get from the sun. I still have it even after 5 months since last treatment.

I wish I could offer more help. Just asked questions on MCC and I am sure with all the members their experiences can offer you more guidance and information.

I didn't notice any "tan" after radiation therapy (60 Gy photon SBRT to the prostate; Canada funds proton RT only for pediatric patients), but definitely had the urge to go to the bathroom often, and it got worse a year later for 6 months including a few instances of very visible blood in my urine.

A cystoscopy showed a very small area radiation damage to the very bottom of my bladder where it touches the prostate, but fortunately the rest of the bladder was in excellent condition. After 7 months, including some lifestyle changes (stricter limits on caffeine, carbonated drinks, spicy food, and alcohol, to avoid irritating it), it suddenly cleared up. At the worst point, I was waking up every 30 minutes to go to the bathroom; now I can confidently go 2-4 hours without access to a bathroom, and it's a big improvement in my quality of life.

northoftheborder, Proton radiation is very different from photon. If you had photon you probably had the type that rotates around your body and radiates the prostrate from many angles. You probably would not have the tan marks that you get with proton. With the standard proton radiation the entry area is usually on the both sides of body just above hip area. This is the area that a lot of us will get a tan mark and is normal occurrence from proton radiation as it enters a specific area.

It is too bad Canada does not allow proton for adults. There is a lot of data that it possibly can reduce radiation damage to surrounding organs and tissue. The Proton beam does not release (it can be programmed to a specific distance to release it's radiation) it's radiation until it hits the prostrate and does not continue through the body like Photon. I had proton beam radiation treatments.

The proton beam releases a very reduced amount of radiation when it enters body, realeases it's radiation dose at a specific point and stops. It does not radiate past the prostrate or the organ/tissue being treated. It can if programmed to do that based on need. Mayo Rochester and Mayo Phoenix offer proton radiation treatments for prostrate cancer. Jacksonville does not have proton radiation but is building a new cancer center that will have it.

Oncologist/Radiologist are treating pediatric cancers using proton raditaion to reduce the long term side affects and secondary cancers of radiation treatments. Proton can be done using proton pencil beam (fine tuning the radiation beam) like eye, inside neck, brain cancers.

I had my proton radiation done at UFPTI because Mayo Jacksonville only has photon. Mayo Jacksonville refers a lot of pediatric patients to UFPTI because of the benefit of proton radiation (especially proton pencil beam) for reduction of secondary radiation side affects and long term sides affects over photon. I was shocked to see how many children were being treated at UFPTI and they have a whole section of the center dedicated to children's care and treatment rooms.

Sound like you are doing much better now. I hope you the best.

medq13: I had a very specific type of photon machine that allowed the use of very narrow margins of 2mm vs 3-5 mm for proton and other photon type machines. Narrower margins reduce healthy tissue exposure and help minimize side effects. I had 5 hypo fractional treatments that finished in February and I also had Spaceoar gel inserted.

I had some issues with urination restriction after the third treatment but Flomax took care of it. No blood anywhere. PSA blood tests have shown a continued reduction in my PSA level. I did not have ADT, as you did, so I believe your psa should be pretty darn low. I did have a stronger urge to pee a little more often, for a couple of months and carried a hospital pee bottle in my car, just in case, which I was happy I did a couple of times (especially when I stopped at a service area that had closed their bathrooms).

My brother had the same specific narrow margin photon machine AND ADT in January, at Weill Cornell in New York City. His cancer had invaded outside his prostate. They gave him Lupron and he has been having reactions to the Lupron (leg pain issues, tired, weak...). He is talking to his medical team for a Lupron alternative. He has not been physically active during most of his life and it seems as if that can be a huge factor with side effects. His PSA, however, has remained very low.

Since February, each quarterly blood test made me wonder what will that PSA look like and if it rises, what that will mean in terms of imaging and treatment, including new medical discoveries which are moving along. The rest of the time, I am able to go through normal life activities a little more cognizant of the good things to appreciate every day in my life. Generally, especially after reading all the stories from this group of cancer patients on this site, I feel blessed and lucky as there are some REALLY complicated and heartbreaking, life changing, patient cancer experiences.

I've been reading up — both Ontario and Alberta (at least) have been researching the benefits of proton RT for adults for avoiding side-effects. Alberta looks close to approving it in some cases, funding patients to go to the US for now until they build their own facilities; I'm not sure where Ontario is.

In my case, I was happy not to have to travel away from home at a difficult point in my life (I was still in a wheelchair at the time, just a couple of months home from a long hospital stay), and while the radiation damage to my bladder is annoying, it's not serious, and is almost fully under control now.

That said, I think it will be great when the provinces do make proton treatment more widely available for adults, especially when the tumors are closer to the brain or vital organs.

@medq13, when did you finish radiation? How are you doing? What is your follow-up schedule with your cancer team?

I had 39 radiation treatments when my cancer came back after 7 years of being cancer free. I noticed that my urinary frequency and urgency is greater after the treatments , still, to this day , and that was 10 years ago. I also have more frequent bowel movements.

I had 33 doses last June/July after having SRT which 4 years after my RP. My urinary incontinence has not worsened. My bowel movements have changed. I can be totally regular with a good bowel movement each morning. However, I also deal with short term constipation, a bit of diarrhea, loose stool, occasional blood stain on the toilet paper, gas, wet farts and having a feeling that a good BM is about to happen, then nothing. That is probably the most frustrating change. However, my 4 PSA's post SRT have been undetectable < .008. To me that is the most important thing and I can live with the other irregularities.

gkm:
Where are your PSA blood tests performed?
Quest Labs sensitivity limit is 0.02 and Hopkins is 0.03?
Best wishes for continued undetectable PSA.

It's < 0.01 on all my lab tests here in Ontario. I wonder if they're differents kinds of tests, and if the differences are significant when PSA is that low.