I apologize for posting here as technically I probably don’t qualify but I have nowhere else to get insight/thoughts on my dilemma.
Physicians have not been helpful -- everyone is too specialized it seems.
I posted one year ago regarding my uPSA becoming measurable @ 0.015; 26 months after RRP and 17 months on TRT and coinciding with a single spike of 970 TT.
See earlier post for details. It is complicated.
For the first 9 months of 2019 I was on low dose Tgel intermittently to deal with LOH symptoms and needing energy and clarity while selling a house and buying and moving into a retirement community while watching closely my uPSA, TT, fT, DHT and E2.
I can post E2 graph if helpful. Last two E2s have been 20, falling from a high of 57 in July of this year.
TT has been in high 200s to mid 400s and fT around 3 (6.6 – 18.1). My symptoms are more reflected by the fT as opposed to the TT. Rarely has my fT reached 6 while on TRT. When it did, I felt like I was in my 20s!
When my uPSA reached 0.026 in Oct 2019, and at my request, my PCP agreed to try Avodart to lower my DHT (it had as high as 124 in Aug) (I only began measuring DHT earlier this year as a result of what I have learned from this group) and you can see the impact of the Avodart from the graphs. I posted his on Imgur and you can click on this link.
I stopped the Avodart after 3 weeks as I became concerned that I could be masking a BCR. I also discovered Avodart can have effect up to 4-6 months after stopping it. It has been two months off the Avodart and as you can see the DHT is beginning to increase from a low of 5.
I have stayed off Tgel the last four months, since selling our house, downsizing and moving into a retirement community.
In summary, my thoughts are that I have prostate cells remaining, (unknown if they are cancerous at this point). Either way, DHT would presumably increase the uPSA which in my case if it is due to cancerous cells, could mask or delay diagnosing BCR and possible SR or other treatment. Also, whether it is wise to use TRT.
Forgive me if this post is inappropriate for this group but I have been unable to find research or information that reflects a case like mine.
I appreciate all thoughts, ideas, suggestions, cautions.
Wishing everyone a well 2020.
LowT
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LowT
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I am asking for input to assist in planning a thought-out approach knowing there are potential risks of continued use of TRT. And if I choose TRT, should it be with 5aRI &/or AI? (or neither?)
Since stopping the TRT I have gained 20# along with all the classic issues of LOH. The mental fogginess is substantial making sorting through this data even more overwhelming. Mental activity requiring clarity must be done in the early morning after hopefully a good night’s sleep. I have osteopenia from the low T with its own issues and potential risk of fracture. Spine BMD density improve after 15 months of TRT but still osteopenia.
If I use Avodart, and the cells that are responsible for the uPSA are cancerous, would this delay a diagnosis of BCR (classical definition – my PSA is not near that) and thus cancer would have remained untreated and have had prolonged opportunity to become established or metastasized? Or would it be better to not use anything that may mask that so treatment would be received sooner rather than later if that should be the case.
Or is it best to “suck it up” and stop all TRT and see what happens.
If cancerous cells are present, will keeping the DHT low cause it to grow more slowly?
What about E2 levels? What level is preferred? (<10?; <20?)
One last question – does anyone know if it is possible to measure free PSA on uPSA sample.
If so, and the result was less than 10 or 12% (more likely cancer) vs 35% (more likely non-cancerous), this might also be helpful in decision making.
No reason you should not post here and get input from a bunch of smart and informed men and women. I am not one of them as I got lost in all the acronyms, numbers and abbreviations. With men on this forum with PSAs in the 1300s, it may be hard to relate to barely measurable PSAs like yours. "_P_ermanent _S_tate of _A_nxiety" for you to be sure.
What I read is a man near my age who can't think/is weak and fatigued/bones turning to eggshells off of testosterone obsessing over where that teeny amount of PSA is coming from and will he release the beast of PCa if he feeds it the food that the rest of his body and brain so clearly needs?
Isn't THAT the forest?
Like Nakakrats, I am not sure what you are asking. Also I am not sure why. PSA is a number, a construct. Your life is your life--the only one you get. Live it!
I am getting ready to pull the trigger on returning to TRT but in doing so, being informed and responsible about it- including possible use of Avodart &/or AI.
Without context nothing in life has meaning and all I’m trying to do is be aware/informed as much as possible so that when I take the next turn in the road I’ll will have done my due diligence in making that decision. We know little about the beast but it does reveal partial images of itself which help in game planning and strategy. Each case of PCa is unique and in a unique context. The wisdom shared on this group by men on similar journeys provides education, hope and healing whatever the outcome. Thank you.
Thank YOU. I went against conventional wisdom and "Standard of Care" when my MO recommended "salvage pelvic bed" RT after my RALP. Based on what? asked I. Just to be safe, says he. I knew two things: like you I was making as informed a decision as I could & I would have to live with whatever was the outcome of my decision about MY personal PCa. And a third thing: there is no "safe."
I'm Gleason 9, T3b/c, lots of invasion. I had RP but my SOC MO talked me OUT of radiation. She is amazed at how well I am doing on the SPT and doesn't want me to go through known sides of radiation. She still holds out radiation as a possibility for the future but not until and if I need it.
Had risen to 0.026 two months ago and fell to 0.010 after three weeks of Avodart. No
Avodart for two months and subsequent uPSAs of 0.012 and 0.014.
What is TNT?
The bad zones for PCa are TT<100 and TT>1500. If you don't want to do SPT or can't then look into BAT. If having zero T is okay with you then think about ADT. Not okay with me and I'm too young to mess around with the ensuing resistance to a primary therapy. ADT has lots of sides for some guys.
Your PSA is very low so not as much possible harm in trying SPT as long as you monitor your PSA. If and when you do SPT your PSA might spike for a few weeks. Then go down (mine never spiked but my understanding is that a spike is common).
Make sure E2 is in check (use an AI + cruciferous veggies, DIM and I3C if needed). Your target for estradiol (E2) should be around 15-25 pg/ml.
DHT blockers are also needed. Avodart and/or finasteride (I take both). You want a low level for DHT (mine is about 30 ng/dl).
Think about pregnenalone cream. Raises preg rather effectively.
Most important: monitor your PSA and your hematocrit. If hematocrit goes up too high you'll need to give blood. Simple, very common, and 100% effective fix. Mine didn't go up very much but a friend of mine is on the same T-cyp dose as me (400mg/wk) and his went up a lot.
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