Post-treatment testosterone
I was G7 (4+3) and treated two years ago with five sessions of SBRT, two months of doublet therapy and then four months of Orgovyx ending in 10/2024. My PSA has been undetectable for a full year.
My pre-treatment testosterone was in the mid 500s. Three months after stopping, it reached ~350 but has been bouncing around since and is now 260.
My GP says TRT is a hard “no” after prostate cancer. My sexual health doctor says it’s fine and he’s seen no difference in recurrence between those who do and don’t supplement. My oncologist says it’s up to me.
My urologist has the most nuanced opinion. He thinks supplementation is OK but questions if it’s needed. He thinks I should go by how I feel and not just a number from a test and emphasizes that T is not a miracle drug that will “make you feel 25 and solve all your problems” despite online advertising claims.
My libido is the same as pre-treatment and sexual function is good with 20 mg Viagra. I have no trouble exercising. My mental state is decent. I have mild radiation cystitis, but I don’t think T helps that.
My nagging fear, though, is that having relatively low T is damaging me in some way I’m not aware of despite how I feel and that eventually something awful will happen as a result.
I’m leaning towards waiting the full two years to see what happens. Anyone faced a similar choice? How did it work out for you? Thanks!
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As I recall, the biggest side-effects of low testosterone are sexual dysfunction, unintended weight gain, bone-density loss, muscle-density loss, and elevated HbA1C (indicating progression towards type 2 diabetes).
You can monitor all of these, and if you don't find any problems, then there's nothing you need to fix.
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5 ReactionsSome people have that amount of testosterone their whole life. The fact that you’re not noticing anything problematic makes a lot of sense since the amount of testosterone you have is more than enough to prevent any of the side effects from ADT. Is your oncologist a Genito urinary oncologist? They are the ones that specialize in prostate cancer, unlike medical oncologist, that specialize in all different types of cancers, and can’t really keep up with everything going on in prostate cancer.
Boosting up your testosterone can definitely cause problems. If you do decide to do that, you should get PSA tests regularly, No less than every three months, maybe even every month for a few months. If your PSA does start to rise, you have to realize that that means going back on Orgovyx, And definitely for a longer time than you did the first time.
Another thing you have to realize is that when you get prostate cancer, it sends cancer cells all around your body Before it is even detected.. They become dormant and can’t be detected by any technique they currently have. When you have a lot of stress in your life, the cancer can come right back as those dormant cells become active.
This was discussed yesterday‘s PCRI conference. Dr. Kwon Was asked if prostate cancer spread was like a pebble going into a body of water and spreading out in waves. He said no, Prostate cancer spreads in a stochastic spread that goes everywhere. He wasn’t even discussing the dormant problem. A big boost in testosterone can activate those cells that have spread.
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5 Reactions@northoftheborder Yup. And beyond monitoring, ALL of those potential side-effects of low T are manageable with a proactive approach to exercise, diet, calcium supplementation, and the miracle-male drugs. As for the 260s being "low T", I think it's kind of at the low end of normal.
@guybe | As for the 260s being "low T", I think it's kind of at the low end of normal. |
This is the part that confuses me. A chart I saw about T recovery post ADT showed only 50% recovery but they considered 350 to be recovery. Some places use 300 as low normal. The Orgovyx web site considers 280 to be recovery and I assumed they fiddled with the numbers to make themselves look better. The test at my cancer center uses 300 but the urologist I went to see for a different opinion said 250 is low normal. The ads I constantly get tell me 800 is optimal but that seems like the high end of the scale. I guess that's why the urologist said to go by how I feel more than a specific number.
@jeffmarc My oncologist specializes in breast and prostate cancer. Apparently there are some similarities between the two in that the majority of breast cancers are hormone receptor positive.
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1 Reaction@scottbeammeup I think you are okay. A 260-testosterone level should keep estradiol levels normal. The lack of estradiol causes bones to deteriorate when on ADT. Can get this tested if concerned. This is an advantage of using estradiol patches vs. other forms of ADT. It is also a concern when using TRT since estradiol levels tend to rise with the increased testosterone.
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1 ReactionTo be fair I haven't had my t measured since my treatment completion was early May 2024, I have noticed I don't have any interest in sex whatsoever, this may be linked to amongst having prostate cancer I'm have been in process of seeing a consultant to sort out my stenosis in my neck , am pleased to say I will be having the surgery on 5th of May, in between this I have just been investigated for bowel cancer, after 2 colonoscopy, was given the all clear
@jim18 My estradiol is low, at 6, when typical levels are 10-40. I have full-on osteoporosis now but am holding off on taking another medication with potential long term side effects. Initially I was gung-ho when told it reduced my fracture risk by 50% which is huge, but then I did the math and was told I have a 10% chance of a fracture within 10 years and medication will lower that to 5%. Not sure if that's worth it.
FWIW, my LH is 15, off the charts high, so it's not a pituitary issue.
@scottbeammeup The "low" threshold range you noted as 250 to 350 looks like the textbook definition of "ballpark". That's appropriate for an estimate where there's no distinct threshold at which very bad things happen, but they've got to say something. (Like when you fall from a 10-story roof, your health is perfectly fine until you touch the next thing. Very boolean. There's nothing like that here, so opinions will vary. And everyone will have one.) I do love it that the "ads" say 800 is optimal. Of course they would; they're ads, and we must all have some deficiency that their product can cure. Especially when it touches the heart of male insecurity. That kind of made my morning! Good luck, man.
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1 ReactionI can only echo what the others say...if it ain't broke, don't try and fix it.
As to the "T is fuel for the fire...." comment, well, I am throwing the BS penalty flag. That is a generalization and not necessarily true in all cases. I've done ADT twice, for defined periods. First time was part of triplet therapy, 18 months of Lupron, 2nd time was as part of doublet therapy, SBRT + 12 months of Orgovyx.
In both cases, T recovered to 400+ in the first six months. So, if T is fuel...why did the first vacation last five years, the 2nd one is at two years and continuing?
As to 300, 800, 250...well, those are "statistics," don't get me started on population based statistics, Bell Curve, standard deviations, averages, means, medians....
You describe that life at your present T is more or less "ok." I assume gone are the hot flashes, muscle and joint stiffness, fatigue, genitalia shrinkage...if so and you can live your life doing things you like, travel, exercise, going to concerts, walking the dog, well, you're ok.
I'm riding in my 6th Garmin Unbound, a 50+ Mike gravel bike ride though the Flint Hills of Kansas at the end of May on Sunday I did a 52 mile ride locally, a "heat check...!"
Here in Kansas City there is a company that runs an insane number of commercials promising to get your sex life back if you have "low T.. aka ED."
I'm assuming it's TRT,
I just have to smile and say you've got the wrong audience, it's my wife you need to talk to...
I am pretty sure I'm not alone in that, many of the dads in my social circle hint at the same issue.
So, you seem to be doing ok at your present T level, carry on.. !
Kevin
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