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Posted 3/25/2022 2:20 PM (GMT -5)
II got the result of my PSA test and it was 0.19 up from 0.13 three months ago. As you can see from my history, I had prostate surgery in 02/2009. in 2016 my PSA was 0.01 followed by slight increase every year until 2021 when it became 0.12 at which time I had IMRT for 8 weeks. this last result shows doubling time of 8.1 months which is very disappointing. I'm assuming that the next step is ADT plus HR inhibitor. Any advice?
Posted 3/25/2022 2:49 PM (GMT -5)
Ed,
I don't recall if you have an MO, but that is the practitioner I would be seeing now. I'm not sure if doubling times are accurately calculated at your current PSA range. In the past I think most MOs would let the PSA increase and then start ADT. Different MOs can vary greatly for when they want to start ADT. Part of the decision involves patient comfort/discomfort with knowing they have an increasing PSA. There may or may not be an advantage to starting ADT early.

These days, with the sensitive scans, some docs seem to be letting the PSA increase for imaging to see if spot radiation may be possible.

Good luck Ed!
Posted 3/25/2022 3:19 PM (GMT -5)
Ed - I agree with mattam, time to find a top oncologist (MO) to take over your care. You have had primary and secondary treatment so that limits the options somewhat. That is my plan when the day comes.

My thought, unless the best oncologists talk me out of it, will be to let PSA rise to a level where the new PSMA scans have decently shot of locating the PSA source. That may be as low as 0.30 nowadays but the higher, the better to increase the odds of finding something. At some point, one has to go the hormone therapy route but it seems that the delay waiting for a scan to have a chance of finding a target is worth it. Treating the whole body for the rest of your life is not as appealing as possible finding a rogue lymph node and blasting it with a shorter period of ADT. Could find stuff all over the place as well but at least you know that

Dr. Sartor at Tulane and Dr. Kwon at Mayo Rochester seem to get a lot of industry recognition as the leading edge prostate cancer doctors for advanced cases. Never hurts to call and see what can be arranged.
Posted 3/25/2022 3:45 PM (GMT -5)
My plan is to consult with an MO and see if I can get a PSMA Pet. Most likely he will put me on ADT with possibly Zytiga or Xtandi. I just hope that it can work long enough.
Posted 3/25/2022 6:04 PM (GMT -5)

Ed C. (Old67) said...
My plan is to consult with an MO and see if I can get a PSMA Pet. Most likely he will put me on ADT with possibly Zytiga or Xtandi. I just hope that it can work long enough.

Ed,
As you know, there are never guarantees with this this business, but since you are castrate sensitive the combination of Lupron + Zytiga or Xtandi should keep you going for years. If you're feeling anxious, I think you can relax a bit.

It might be a good idea to develop a mild exercise routine before it comes time for ADT. My daily walks have inspired me to watch my diet such that I've lost quite a bit of weight while on ADT.
Posted 3/25/2022 6:48 PM (GMT -5)

Ed C. (Old67) said...
My plan is to consult with an MO and see if I can get a PSMA Pet. Most likely he will put me on ADT with possibly Zytiga or Xtandi. I just hope that it can work long enough.

ed you are 80?
Posted 3/25/2022 7:40 PM (GMT -5)
Mattan, I exercise 7 days a week at a gym, and do a lot of stretching and so resistance training. When I don't go to the gym, I walk over 4 miles. I play golf once or twice a week and do a lot of gardening and keep my weight down. I hope that prepares me well for whatever comes next.
Posted 3/25/2022 8:00 PM (GMT -5)
Ed,
That's pretty impressive! You're going to be as prepared as anyone could be for whatever your treatments may be. I think you will do well.

Have a good weekend.
Posted 3/26/2022 7:40 AM (GMT -5)
Thank you all, F8, I'm 80 years old. I'm looking for a n experienced Prostate Oncologist in Austin Tx or any near by facility. If I can't find one in Austin, I'll try MD Anderson or Houston Methodist (3 hours drive away). If you know of someone, please let me know. Your help is appreciated.
Posted 3/26/2022 6:22 PM (GMT -5)
FWIW:

I had a prostatectomy 10 years ago and IMRT/IGRT (39 treatments) 7 years ago. I had asked my oncology urologist (M.D. Anderson trained) what if radiation fails, and he said that they can do focal radiation.

I guess one would have to wait until the PSA has increased to a point where a scan can locate the cancer. And I would think side effects from another round of radiotherapy would be far worse. I guess it can be curative, unlike ADT option.

Has anyone very gone back for a second round of radiation?
Posted 3/26/2022 7:13 PM (GMT -5)
Focal radiation like HDR brachytherapy and SBRT generally have less significant side effects. Other focal treatments like HIFU and NanoKnife can also be used and have low side effects.

Since you had a full boat of IMRT over the entire prostate bed it would take a very significant passage of time before the same radiation could be safely administered. Thus, you would not have a repeat of that method.
Posted 3/27/2022 7:35 AM (GMT -5)
Ed - Don’t forget that video consultations are quite popular nowadays and can save you a lot time if you are trying to get the best advice on your situation. Since you are retired, you can be a pain in the butt on the phone during working hours and be on hold for longer periods of time until you get what you need. Many of the top prostate people have their email listed at the university web sites as well as department phone numbers. I handed my wife the phone number of University of MN and Mayo Clinic Oncology depts and she had appointments with a top oncologist at each location in a couple of hours. No messing around with recurrences. You probably can get treated in Austin for most things but need the best advice at this point.
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