Latest Info if you've been recently diagnosed with PC

I have a doctorate in another field but am a researcher. Having recently been diagnosed with a PSA of 100 and fast growing, I have been researching everything and have come to some conclusions. This is NOT medical advice. This is simply my journey.
First. Since PSA elevated, I immediately got into an oncologist to start on a hormone therapy plan, Casodex (bicalutamide is the generic). This started starving the PC from feeding on my testosterone. Also takes the pressure off making quick decisions. Then I Got an MRI. Not all MRI equipment is the same. The Prostate Cancer Foundation has good info on the best, the multi parametric prostate MRI. I started there. It gave the doc three perspectives on what I am up against. I made sure the radiologist reading this has experience with this technology. To make sure the PC was not in my bones, I got a bone scan (nuclear medicine).
Next, the only type of biopsy I would ever get is to have an MRI guided biopsy using my MRI. I will get at least 20-25 specimens. Urologists love to do the outdated TRUS biopsy with 12 samples sticking a
needle up your rear end. This is hit or miss and should not be allowed with the new technology that is 30% more accurate. My research came to the conclusion that having a biopsy before these other scans can possibly cloud imaging.
I haven't received results from biopsy yet but the MRI showed PC in the lymph nodes. The bone scan came back negative for PC in the bones.
The medical profession only confirms PC by samples from a biopsy but with the MRI, I now know it is there. With the PC basically arrested for now, I can take some time to take a few deep breaths and begin researching the various hormone treatment options as well as radiation options. Initially, it looks like either photon or proton radiation. I will looking into the age of equipment, the various protocols the equipment has been upgraded to etc. Also, the experience of the radiologist with that equipment. This will be extensive research. Since the PC is outside the prostate, I will not even consider having it removed. With the risks involved with prostate extraction, I would not consider it, even if it was contained. The 2 best options look like some form of radiation or nuclear seeds to take out the PC inside the prostate. Since the PC is outside the prostate, my focus will also be on shopping for the best oncologist with experience specializing in prostate cancer (PC).
If there is interest here, I would be more than happy to update my findings...

Craig,
Welcome to our club. I'm sorry to hear you were initially diagnosed with such a high PSA, but there are others here who had similar and even much higher PSA at diagnosis who are doing well after years of treatment. I agree you are taking the right course so far -doing thorough research and not rushing into treatment other than your initial ADT. As Prato has suggested, creating a signature with the shorthand details of your diagnosis and treatment would be helpful. This helps site members get a quick overview and more easily see if your experience may be of particular help to them or vice versa. If you are located within a reasonable distance of a leading cancer center - Sloan Kettering, Mayo, Cleveland Clinic, M D Anderson, etc. I suggest you go there and consult with an experienced genito-urinary cancer oncologist and radiation oncologist to help you sort out your best course of treatment. I'm with Dana-Farber and cannot speak highly enough of their level of experience and care - including top-tier medical care, and also the returned phone calls, cooperation with scheduling, coordination with other doctors, etc. Please keep us posted.
Jim

Danger...Danger...warning...warning Will Robinson...warning...Danger...Danger...….till next time///

Craig, Welcome to the group where no one wants to be. One key issue you have recognized is determining whether the PC is still in the area around the prostate e.g. lymph nodes or more wide spread and metastatic. As you know, radiation in the prostate area may not help you if your PC is metastatic. I suggest you look for information about a PSMA scan.

Great information Craig sorry you have to deal with this. If you haven't read, The Key to Prostate Cancer Mark Scholz I would get a copy. The book includes various experts who take on different stages and recommended treatment. I used MD Anderson's pre-treatment protocol which included a colonoscopy, but was treated locally as they had basically the same equipment. It appears with your information you are heading for the triple treatment RT, Seeds and Hormones. That way you blast it with everything. I am still recovering from my 6 months on Lupron with remaining joint pain, but the radiation drag on my energy has gone away. I am 4 months out and it takes on average an equal amount of time to shake the hormone side effects. But T is normal and PSA is really low. Exercise is the key and you will need to up your game. It makes you feel better too. Good Luck!

69 yrs., marathon runner, 44 3D-CRT/IMRT Radiation delivered via 3D-CRT in 1.8 Gy minimum dose fractions to a total of 79.2 Gy., 3.2.19 PSA .04 T.Tot 440, 10.5.18. PSA 0.12, 8.12.18, 1.42 June 18, 2018 (Lupron 5.21.18 & 8.15.18), 12.7 May 2018, 13.7 Jan. 2018, 2.1 May 2012 TTot 686 ng/gl. SpaceOar 9.6.18, testosterone <.7, 8.15.18, Tot Mayo 19 ng .17 testosterone Free 6.18.18, May 21, 2018 T. Tot 686ng/dl; Gleason 3+4=7 involving 15% of the right apex and 15% of the right mid, 3+3=6 prostate cancer involving 5% of the left base. Pathology interpretations by John Hopkins, UNM Cancer, and SF Path 3+4=7 or 4+3=7 MD Anderson Proton Center w/o %. T3 MRI w/ contrast 1.8 lesion left side 5P, Neg. Bone Scan. Prolaris test 3.5 consistent with intermediate and a PTEN test negative. Father PC age 78 RT & ADT now 94 yrs.

Post Edited (SantaZia) : 4/1/2019 6:14:15 AM (GMT-6)

Hello Craig and welcome. Sounds like you are much more well informed than most new patients and are doing all of the right things. Please stay with us and let us know how things go.

Jim

logoslidat said...
the magic of IP addresses......

Logos, send me an email if you are so inclined....just wondering about this phrase.

Thanks,

Jim

I'm curious what your PSA history is. It's very good that the bone scan came back negative. When results of the biopsy come in, you will know much better what you are dealing with.

“Routine bone scans—prescribing them for everyone diagnosed with PC—is a relic of the past...when they were initially diagnosed, so of course the first thing they had was a bone scan because a high percentage were positive for metastasis. Thirty years later, there's been a dramatic shift and the vast majority of newly diagnosed are "favorable-risk" cases...”

I wouldn’t put the bone scan machines in mothballs just yet. When a lack of screening catches up with us those machines will be pretty darned useful again.

Is Craig Smith still around? Did you get the results of your biopsy?