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Posted 6/28/2019 6:49 PM (GMT 0)
JayMot: AJMan, Can I ask, when you hit the .06 in Jan, why did you wait until May to start treatment? Did it take that long to do the scans, MRI, etc., or did you want a couple more psa data points? What did your RO say in Jan?

Answer: I started my own uPSA monitoring with Labcorp starting @3 months post surgery. I was monitored by my Surgeon who suggested I see an RO @ 6 months when I hit .04 on his PSA and I was .043 on my Labcorp. The RO wanted his own PSA and I came back <.05 so he said wait another 3 months. @9 months I hit .063 on my Labcorp but was still <.05 from my RO. He said lets wait another 3 months. I said "what for"? He said he wanted to confirm the rise and that depending on where we land scans might pick up location. I had modeled my PSA and told him I was pretty confident it would be @0.1 in 3 months. He said let's see. 3 months later it registers on his test @0.1 (detectable for the first time in his book). My Labcorp result was .096. Now he says we need to do something. In retrospect I should have insisted in January. So be it. I am being treated at a very well known cancer center of excellence often referenced on this board as being outstanding. We all need to advocate for ourselves, do our own research, check and re-check everything, question the questions and then make decisions. I have read tons of research, have developed my own decision models and generally don't let much get by me. Entering into this whole thing I used to adopt a "trust but verify" mentality but now it's all "verify and then verify again".
Posted 6/29/2019 6:47 AM (GMT 0)
JayMot

Sorry to hear that you are contemplating HT and or SRT. I understand your concern on the rise of your PSA but it is still very low. I believe your plan will be fine and if you need to wait until after a week long vacation then go for it. I just don't believe one week will make a difference. Do what keeps your sanity. Remember you've always got hope. And you're in a good spot to count on many more family vacations. The treatments you're consudering are serious and not without potential side effects. But I say they're worth the risk.

You're going to be around a long time. Try to stay ahead of it and get back to living.

Will be thinking of you. Take care

Gunner
Posted 6/29/2019 12:07 PM (GMT 0)
'morning, JayMot.

When my PSA hit .06 two years out from surgery I went all in on diet (and exercise). I'm just another anecdote here and I well know choosing to not eat meat, sugars, etc. is not for everyone. It's an option with the possibility of slowing progression and other health benefits. I think in our collective advice-giving we best keep this option on the table.

Best to you -
Wilderness.
Posted 6/29/2019 3:59 PM (GMT 0)
I recommend you call Dr. Dattoli for a free phone consult. He is the best RO in the business with independently verified, published stats to prove it:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2933915/

To kill the cancer, the RO must first find the cancer. Dr. Dattoli used Color Doppler Ultrasound to measure blood flow. That located my tumor where the surgeon sewed my urethra back together. You get to see a screen in real time. Mine lit up just like a bad storm on weather radar. He fuses the ultrasound data with data from his own CT scanner (and other tests run at Sand Lake) to define the tumor in 3D. He has special technology that monitors your breathing and prevents the machine from radiating until your breathing hits the "gateway". He calls this Dynamic Adaptive Radiation Therapy.

He also checks your bones each year with a QCT svcan. I found out I have osteoporosis this way.

He also recommends diet and supplements to help fight the cancer.

I had SRT 4 years ago and still have "zero PSA" using ultrasensitive tests.

My PSA was .048 at my patient intake. Dr, Dattoli said that I have very good odds for a lasting remission.
Posted 6/30/2019 12:25 AM (GMT 0)
Wilderness, WOW! If you pulled the trigger on SRT at .06, you would have been drastically over treated. I guess you are one reason some RO's wait until they are sure there is truly a recurrence. Best wishes on your continued low numbers. J
Posted 6/30/2019 4:49 AM (GMT 0)
JjayMot

I think I am close to where you are in readings. I had surgery in 2007. World class surgeon in Houston. My uPSA readings were similar to yours. Finally eight years later I reached .06. Surgeon was heavily involved in research that .03 was the marker for eventually having verifiable recurrence. I was hovering up and down for several .03 readings. Finally at .06 he said it was time to do SRT. I went to M D Anderson in Houston for SRT. Had another world class doctor for RO. She too, was involved in the research that .03 was the trigger for SRT. I completed SRT in May of 2015. ALL of my readings have been <.006. Praise God! Absolutely nothing to the treatments, just the time to leave work, drink the correct amount of water, ten minute treatment, go back to work, ring the bell after 35 treatments. After three or four <.006 readings, she said, “I think your’e done with PC”!
Certainly glad I did not wait to start and missed the opportunity to be done- there are no do overs here. Hopefully, I will see my grandson’s college graduation someday. Ten years from now, I don’t want my grandson James saying, “ DeeDee I sure wish PawPaw was here”. “Me too, James, we all miss him”.
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