Weaning off Testosterone UPDATE

[ABNAK]

FYI, I have faced some serious health related stuff in my life, so I know what you're dealing with mentally speaking. Understandably, feeling various emotions, few of them positive. It's interesting to note, but not likely applicable to you right now, researchers are finding exposing prostate cancer to very high levels of T then very low (known as bipolar androgen therapy) may be an effective future treatment. See below.

Two, below is the LEF protocol page that discusses various topics of importance. It's a long read, and a lot to take in, but worth reading. Take notes, read several times, ask Qs of docs, based on notes, etc.

Right now you're feeling overwhelmed and freaked out, and I get it, and BTDT. My advice, don't leap at a treatment, take some time to really get a handle on your options once the shock wears off, and realize, you'll be ok!

http://www.lifeextension.com/Protoco...Cancer/Page-01

Non journal write up:

Man 'cured' of prostate cancer after doctors shock tumour to death with
testosterone

http://www.telegraph.co.uk/science/2...-testosterone/

Study of interest:

Effect of bipolar androgen therapy for asymptomatic men with
castration-resistant prostate cancer: results from a pilot clinical study.

https://www.ncbi.nlm.nih.gov/pubmed/25568070

Thanks Will. It is greatly appreciated. I will read through your info and add it to my list of questions I'm already compiling to ask the surgeon.

My thinking is that if I can nip this in the bud by removing the prostate (assuming of course this "nerve-sparing" surgery is all it's cracked up to be) then that may be the best course of action as it stands now. My Gleason score is 6, which is pretty low and IMHO a silver lining to this cloud I'm currently engulfed in.

[PatrolRifleGroup]

Sent you a PM

[Hmac]

I would have surgery too. The Gleason score is reflective, and a score of 6 is encouraging on its face, but there can be surprises at surgery and the biopsy Gleason score may be different than the specimen Gleason score...the score is upped about 8-10% of the time after surgery. If you have radiation and there's a local recurrence later....you've limited your options. If you have surgery and there's a local recurrence later, you can have radiation.

[ABNAK]

I would have surgery too. The Gleason score is reflective, and a score of 6 is encouraging on its face, but there can be surprises at surgery and the biopsy Gleason score may be different than the specimen Gleason score...the score is upped about 8-10% of the time after surgery. If you have radiation and there's a local recurrence later....you've limited your options. If you have surgery and there's a local recurrence later, you can have radiation.

That is my current thinking. Radiation is a one-time deal, best saved for the possibility of it metastasizing. With it caught this early my focus will be one preventing it's spread while it's still (hopefully) localized by removing the offending character.

[Hmac]

That is my current thinking. Radiation is a one-time deal, best saved for the possibility of it metastasizing. With it caught this early my focus will be one preventing it's spread while it's still (hopefully) localized by removing the offending character.

Radiation can be curative, but if it's not, your subsequent options are limited and problematic. In the hands of a skilled urologist, a laparoscopic or robotic prostatectomy will have very limited side effects and still leaves subsequent options open. I have a close friend that had a biopsy Gleason score of 7. At surgery it was upped to 8 and had lateral extension. He starts radiation in about a month. His chance of a cure now is excellent. If he'd opted for the radiation alone, he would eventually be in deep shit.

[SamAdams]

Good luck, best wishes.

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[PatrolRifleGroup]

I was 37 and on TRT when I popped a high PSA, believe it was 7.2 at the time. My urologist at the time was an older guy who was classically trained, so his first reaction was to do a biopsy. Those results came back 2 out of 12 cores positive with Gleason 6, with 2% and 4% of each core involved. I was in outstanding shape at the time and the diagnosis rocked my world. It was hard enough to digest the information, let alone ride out the effects of coming off TRT. I was able to get on HCG therapy to kickstart my body's own T production and I eventually topped out at roughly 300. Not great but not bad as well. My urologist's opinion was that I should have my prostate removed immediately, so I searched out a surgeon in Celebration, FL who was "The Guy" to go see. I had surgery scheduled and plane tickets bought when life intervened.

A friend of mine from high school referred me to a roommate he had in college who was now a urologist. When I say referred, he reached out to the Doctor who gave me a call on my cell one night. That call lasted about an hour. Who else can say they got 5 minutes with their doctor, let alone an hour? I wound up scheduling an appointment and brought all of my medical records, including the results from my Oncotype DX genetic testing that had been performed on my cancer cells. Those results came back very favorably, basically stating that my cancer was a slow grower and I lacked the markers for metastatic types of cancer. I basically had an 87-91% chance that my cancer would be a slow grower. The doc, who is now my current urologist, was my age and had more of a up to date view of prostate cancer. He stated that if I had been his patient at the time of my high PSA, he would have waited to do a biopsy and see if it came back down to a normal range....which it did within months. His basic stance was that prostate cancer is over-treated and that he recommended only intervening if the labs show that things were aggressive or if I couldn't live with knowing that I had cancer in me. He also offered this bit of insight; his dad had prostate cancer, his grandfather had prostate cancer, and he added that he was probably sitting there with prostate cancer as we spoke. He stated that if he had my labs, he would do nothing and just monitor. It was a super compelling talk at the time. My wife is a nurse, was present with me, and we went home to discuss the options. In the end she supported waiting and monitoring; you only have one prostate and there's no going back once it's gone.

Unless you have a super high gleason score, there is time to be diligent and weigh your options. I spoke with a ton of people I knew who had prostate cancer in the past, discussed their treatment and their outcomes. The bottom line is that I put faith in the fact that life was intervening for a reason. It was hard to back out of surgery, especially with everything scheduled, but I did. One year after my original biopsy, my current doc did an 18-core biopsy, which showed virtually no change. I was still only 2-cores positive in the exact same area and the volume was the same. My PSA was holding steady at 1.5-2.0 and he agreed to put me back on T therapy. There are new studies out there showing that prostate cells and prostate cancer cells can only absorb so much testosterone, basically a testosterone saturation theory, stating that if you make even minimal amounts of T your cells are already saturated. That being said, whether my body makes 300 ng of T or I inflate it to 450ng artificially, the cells are already fully saturated.

It has been 18 months since I went back on T and my labs are holding steady. I meet regularly with my doc, check my PSA several times a year and will have another biopsy and further genetic testing in the near future. If something changes and warrants immediate action, I am fully prepared to have my prostate removed. As my doc states, "If I'm not worried, neither should you be." He's always told me all along that if I was too mentally bothered my the cancer he would do surgery whenever I wanted. So for now, I focus on enjoying life and appreciate the fact that I have full use of my prostate until such time that we need to intervene. For anyone out there reading this and going through the same thing, PM me for my number and I will answer questions and offer my story in further detail.

[WillBrink]

This thread will be an excellent learning environment for those dealing with prostate cancer and those who will in the future and the input is great so far. Approaches to treatment, and or weather not to treat, etc are changing rapidly, and like PatrolRifleGroup's experience, I'd strong recommend ABNAK and others take time to fully explore all options. We are just lucky we now live in a time such options exist, and new paradigms evolving.

[Hmac]

There is certainly no shortage of clinical research on this subject. A decision like this should be based on peer-reviewed studies, not anecdotes. It's important to get this right. If the choice is between possible overtreatment vs possible undertreatment of a potentially fatal cancer, that's an obvious choice IMHO given the consequences of the decision.

[WillBrink]

There is certainly no shortage of clinical research on this subject. A decision like this should be based on peer-reviewed studies, not anecdotes. It's important to get this right. If the choice is between possible overtreatment vs possible undertreatment of a potentially fatal cancer, that's an obvious choice IMHO given the consequences of the decision.

I wouldn't make any potentially life changing med decisions based anecdotes to be sure and would not recommend others do so either. I would however listen to experiences, then follow up with docs to see if it potentially applied to me and my situation, and weigh the info and make my decisions.