Yes or No to Radiation

genovadm04: I had 5 fractional treatments ending in February but my cancer was confined to the prostate. I am 70 yo and had a 3+4 Gleason. I had opinions from 5 radiation oncologists, including Moffit. Cannot speak for all RO dr's at Moffit but this one did not use the dynamic planning capability of the specific narrow margin machine for prostate cancer. The RO, at Moffit, told me if I wanted to use the dynamic capability of the machine, to go someplace else. So I did. I live in the Orlando area. My symptoms with radiation were minimal urination issues.

My brother is closer to your situation. He was treated in January with the same narrow margin photon machine and he too had 5 hypo fractional treatments at Weill Cornell in New York city. His cancer had spread outside his prostate. He had hormone therapy, Lupron, which has given him many side effects which he is having a hard time tolerating. He has never been in good shape so his side effects may have something to do with that.

If it were me, I would make sure to focus on the type of radiation machine being used as there are different photon machines that have built in MRI with different margins of exposure. This means when they radiate you, they can see in real time what is happening to the prostate position and to the mapping of where the radiation will go instead of using a fused image to make a "best guess". Secondly, the margin specifics are worth discussing with your doctor. Mine was 2 mm around the prostate vs 3-5 with either other photon machines or proton. The specifics of the MARGINS are really important as that affects your healthy tissue exposure and therefore potential side effects.

I had spaceoar inserted to separate the rectum from the prostate, another way to protect healthy tissue and limit rectum side effects. I had narrowed down my choices to a SPECIFIC photon machine or Proton machines. Three things moved me away from Proton. The RO in NYC advised me that bleeding from the rectum can occur, as there was no real time MRI built into the machine so no real time adaptive planning and the margins, I heard at the time, were 3-5 mm instead of 2 mm. I did like Proton's narrow beam and the radiation stopping at whatever levels were set by the Oncologist/Physicist/Dosimetrist. Had the Proton machine had real time MRI and narrower margins, I might have picked it but that type of machine is not on the market, yet.

Good luck to you.

At 84 are you planning on living forever or a nursing home? If the drugs are keeping your PSA and cancer under control, why add radiation? Don't let the doctors pressure you remember they don't get paid unless they treat you, so they have a built-in bias to treat. Take your time and investigate all options. I am 74 and did the 5-radiation treatment at Mayo. My radiation oncologist wanted to do 28 treatments and 6 months of Lupron for my Gleason 7.

In British Columbia the radiation oncologists are on salary so there is no incentive to overtreat. I was 80 when I had my SRT last summer and my goal was to reach 90 so I could see my grandkids graduate from university. Yes, I have had side effects with my bowel movements but they are all manageable and I can still golf, ski and play squash and the good news is that my 4 PSA's post SRT have been undetectable < .008.

mikewo,
Something you wrote caught my eye: “ Don't let the doctors pressure you remember they don't get paid unless they treat you, so they have a built-in bias to treat.”

One of the wonderful things about the Mayo Clinic is that their physicians are salaried, and therefore are NOT incentivized to order any more tests or do more surgeries other than what is good for the health of the patient.

@genovadm04, you got a lot of perspectives and food for thought regarding whether to choose radiation or not. I hope you saw the helpful posts from @jamesharrison @gkm @mikewo @bens1 and @billfarm

Ultimately, the choice is yours and your personal goals and life preferences matter the most. I would ask your team about things like:
- what would progression of disease (and its side effects) look like with and without radiation?
- what are the potential side effects of radiation and how are they managed?
- does my current health status (outside of prostate cancer) play a role in my decision? for example other conditions like heart disease, diabetes, weight management, etc.

And consider your life goals. I like that @gkm is clear that he wants to live to 90 in order to see his grandchildren graduate from university.
What are your life and living goals?

I am sure others like me would like to hear what you choose and why (if you wish to share).

Sorry if I am so cynical that I trust nothing including the medical profession. The doctors maybe on salary but if the hospital does not make money to pay them then what? Why was I told the plan was 28 treatments until I started saying I was going to go elsewhere for 5 treatments with CyberKnife then all of a sudden "we can do 5" here at Mayo. The medical profession with me has lost a lot of credibility since the Covid vaccine push when it was obvious to even a lay person like me that the vaccines did not stop the spread, yet the medical profession was lying about it. When the Yankees and Brewers had outbreaks in fully vaccinated players it became obvious. Yet my GP was still pushing me to get jabbed. Then the mask nonsense about you needed a mask outdoors that was a dead giveaway. If you needed a mask outdoors, you needed a mask in your own home because the air inside is the same air as outside unless you live in a biolab with airlocks. Sorry, but I believe almost nothing anymore.

Many valid points in your post. God gave us a brain and the power to reason. When things don t add up or fit logical reality you as your own advocate need to do what you believe to be in your best interest . I have employed many people and contractors during my career. It might be a shock to some but lawyers, doctors, bankers all fit into employee or contractor status. Someone you hire to get the use of their expertise. Research hard and make the best choices you can.

I chose the radiation at Mayo Phoenix where I live, and the 5-treatment protocol was so easy it made me feel like I was cheating when I rang the bell. I am now 219 days out from my last radiation treatment and have had no urinary side effects at all. I had some rectal bleeding starting on day 140 which was just a streak on the side of the feces. It occurred several times and I have had two days since where the toilet turned pink but not in the last ten days. Nothing since the toilet was pick at all in the last ten days. Studies show that it should heal on its own. I go back to Mayo for my nine-month PSA on 1/17/2024 and hope it is still undectectable.

I have gone through the ringer. Like hormone therapy, prostatectomy, radiation... three times, chemo. Like I said, the works. (NOTE: the worst part was the damn biopsy!) I am really surprised they gave you a choice.

So I may not be the best to talk to. My side effects have side effects. But! Of all the above, radiation had the least impact. It was a piece of cake. The only change I noticed was a slight increase in incontinence. So, big whoop, I wear a pad everyday.

One last note... I trust everything my doctor tells me. Between the group of them, they have kept this 64 year old - Stage 4 cancer guy alive for 6 years.

jamesharrison, you are correct Mayo doctors are salaried and a great thing about Mayo Clinics.

UFPTI, where I got my proton radiation, is part of the State of Florida University Health Care. I went there because Mayo Jacksonville did not have proton. The first thing the oncologist/radiologist said to me is that he is a state employee on salary and does not make more/less from the test or procedures he orders. He said so anything I recommend for testing and procedures is what I feel is best for you and your cancer treatments.

I donate to UFPTI to help pay costs for those they treat without insurance. They do treat a lot of patients without insurance and have an excellent financial assistance office. I donate to many specialty division at Mayo including research. My favorite donation is the good smariatan fund. A fund that helps pay for treatments at Mayo for those who do not have insurance or need financial assistance. I am not rich but able to help so I do.