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Neil S lives in Virginia, USA. He was 65 when he was diagnosed in August, 2018. His initial PSA was 9.00 ng/ml, his Gleason Score was 8, and he was staged T3b. His initial treatment choice was External Beam Radiation+ADT (Intensity Modulated with ADT) and his current treatment choice is None. Here is his story.

Gradual increase in PSA over 3 years, but never above 7 or so. Finally talked into an MRI as a first step, seemed much less invasive and painful than a doctor's offive biopsy. MRI revealed 2 tumors, one of which had grown into the left seminal vesicle. Biopsy ordered.

Biopsy thankfully took place in operating room under sedation. Process reminded me of a colonoscopy, woke up to find it done. 20 samples taken, 17 positive, either Gleason's 8 or 9, from 40% to 100%.

Clearly not an active surveillance situation. Local urologist recommended surgery followed by ADT and a full 9 week barrage of daily radiation treatments. Cancer found so close to the margin all around the prostate apparently leads to the assumption that the entire are has a good chance of being involved.

Went to Duke cancer center for second opinion. Saw a surgeon, radiation oncologist and medical oncologist. All three confirmed the MRI and biopsy results. I was hoping for a "you should do this" opinion but found that not to be the case. They all suggested it was my choice whether to have the surgery first or just go with the ADT and radiation alone. Seems the radiation treatments would be the same number whether or not surgery was performed. Very frustrating, but my first indication that I would have to do much more research and make this decision myself.

After much deliberation, consultation with another oncologist and my GP, I decided to bypass the surgery and opt for the hormone therapy and IMRT treatments. When I pressed the medical oncologist to make a recommendation, supposing she were addressing the condition of her father instead of a stranger, she recommended avoiding the side effects and delay that surgery would entail. My GP agreed. While there is something psychologically satisfying about getting that sucker out of there, and being able to biopsy the prostate and surrounding tissue after removal, I decided it was not worth the potential short and long term side effects of surgery. And my research showed almost identical survival rates either way.Why have both?

I am halfway through the radiation treatments, suffering with a few urinary and bowel difficulties but happy with my decision so far.

UPDATED

March 2019

Finished IMRT a few weeks ago. Bowel problems have subsided, no other side effects so far. Still on ADT, month 5 now. Appointment for first post treatment blood test is April 1st. (no fooling). I assume I will have to stay on this for at least another year. I will ask about other possibilities besides Lupron, which leaves me with at least a dozen hot flashes every day. Non existent libido and general fatigue also. Still a little unsure about skipping surgery and opting for just the radiation instead. Only time will tell I suppose.

UPDATED

April 2019

First post radiation blood test, PSA 0.07. Very encouraged. Will receive the second 6 month Lupron injection. In spite of then weight gain, fatigue and miserable hot flashes (12-15 a day) I will stay with ADT treatment for at least another year. All the recommended drugs to treat hot flashes seem to have their own side effects so I will just grin and bear it.

Still glad I chose to avoid surgery and it's inherent side effects. My cancer was advanced enough where surgery would have been followed by radiation anyway so I saw no real benefit. Not out of the woods yet. I understand that the PSA is not really conclusive until the ADT is out of your system.

UPDATED

June 2020

Still glad I went with the radiation instead of surgery but this ADT (Lupron im my case) is truly miserable. While I am able to function on a daily basis, the hot flashes and lack of energy are affecting my quality of life. I am 18 months into the treatment. Really considered stopping here as I have seen a few studies that question the benefits of long term ADT therapy. However, every oncologist I have consulted has been insistent that 2 years is the standard. With my wife pushing for the full treatment (HA! I wish I could give her the full treatment) I will get my last 6 month shot in a few weeks.

UPDATED

August 2022

Noticable "shrinkage", E.D. which drugs have been unable to treat. Because my cancer was also in the surrounding tissue, the radiation treatments to the entire area have had this effect. My PSA remains very low and my testosterone level has increased to near normal and energy level is back to near normal for someone who also suffers from heart failure.

Glad I chose the radiation route instead of surgery, just wish I had known how brutal two years of Lupron was going to be.

UPDATED

September 2023

Now 4-1/2 years since original diagnosis. 2 years ADT and 42 doses of IMRT later am doing well. PSA still low, testosterone levels back to near normal. Some lasting effects in leg muscles from 2 years Lupron. Found the 2 years of ADT much worse than the radiation treatments, just miserable side effects. Would recommend different drug than Lupron if you decide hormone therapy is necessary for your treatment, especially if you have an ongoing heart problem.

Neil's e-mail address is: neilstaples AT bvu.net (replace "AT" with "@")


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