For the Newly Diagnosed: If I Were to Start Over

Could certainly cut the ADT by 2/3s. Only SBRT would lower the radiation Biological Equivalent Dose by 50%. With a 3 Gy fraction the BED would decrease by more than 1/3. However, the severe proctitis is probably due to poorly delivered and maybe poorly planned (high dose to rectum) treatments vs. the difference in total BED between the fractionations. Does not invalidate the point that if you are getting your body shot full of radiation make sure to the best of your ability that the equipment is state of the art and team delivering it is skilled. I also had a RO state he would cure my cancer. That was enough for me to look elsewhere.

@dhasper Thanks! I'm so sorry for your nearly immediate recurrence. I didn't choose surgery because the doctor said he likely couldn't remove one of the affected lymph nodes due to a prior hernia surgery. All the best for your continued health!

@wheel1 Yes. I had to "discuss" with my medical oncologist the most recent studies that could affect my treatment. I followed his recommendation, and only time will tell whether I should have pressed harder to modify my ADT.

Man, you got the salesmen part right. These guys don't get paid if they don't do their specific thing. Then they lose interest afterwards and try to generate billing with $400 dollar 5-minute blood work result appointments. If I were to do it again, I would choose a comprehensive cancer center over private practice.

@jim18 Excellent insight. I had SpaceOar inserted 3-4 weeks before starting radiation, but it obviously didn't prevent the damage. I've had four of thirty hyperbaric treatments and I think they are beginning to make a difference. I'm hopeful. The radiation oncologist is a great person and the staff are as well. I just think they didn't have accurate enough aim and too many doses.

@chippydoo wrote "These guys don't get paid if they don't do their specific thing. Then they lose interest afterwards and try to generate billing with $400 dollar 5-minute blood work result appointments."

That doesn't apply in most of rest of the world, fortunately. Here (Ontario), family doctors are paid by the province based on the number of patients under their care, so extra appointments mean more work for no extra money — that's why I'm so grateful that my already-overworked family doctor reserved double appointments for me during the first year after my diagnosis.

And hospitals receive provincial funding based on the size of their cachement area, so keeping me in a hospital bed for 3 1/2 months from 2021–22 didn't provide them with any extra revenue (just the opposite: it meant that in addition to my medical treatment, they had to pay for all my meals, prescription medicine, physiotherapy, psychotherapy, etc. as long as I was an in-patient).

@northoftheborder Wow I had no idea. So, I will qualify my statement as being in the US.

@chippydoo We have that in the USA, it's called an HMO. They get paid a flat fee per patient for care so have an incentive to write a quick prescription and send you home with a 6-month check-in. Medicare Advantage is the same with payment per patient scaled based on risk. That is why UHC was charged with Medicare fraud for inflating patient conditions (and their fee). UHC would send nurses to do home visits to document any conditions that were not in the record to inflate the government payment. The more documented conditions and the less treatment the more profit for the insurer. For prostate cancer, the insurer wants you to get the biopsy but then is ok with active (or inactive) surveillance since it is a lifetime condition. The pay is the same.

@jime51 SpaceOar is more important for Proton due to the Bragg peak. If there is an overshoot due to prostate movement, etc. the SpaceOar will absorb the hit. It absorbs a little of the photons but its big benefit is separation so that more photon beams miss the rectum. Photons are always passing through the body (and SpaceOar). The damage occurs when they hit something and stop. Most of the body is empty space even though it does not appear that way. I wish you good fortune on your treatments. That was my biggest concern with radiation but either through good aim, luck or both I did not have any rectal issues, just some minor/moderate bladder ones.