After bicalutimide and a high testosterone level is pre treatment T just guess work?

[SimMartin]

Just turning to fellow travellers on our various journeys for some input/advice/ thoughts as I make a decision on how far to push to the SOC for my high risk G9, given my oncologist is saying 15 months adjuvant (I am nervous of anything less than 18 months) is enough given my co morbidities, age at 73 , current low T at 0,6 (17) and PSA of 0.01 throughout the ADT and that my T will probably take some time to recover anyway offering extended protection.

i am curious, as I didn’t have a pre treatment base line testosterone taken, I did have a T level after 8 weeks of bicalutimide 150mg which was 33.2 nmol/dL (957.5 ng/dL).

Can I make ANY Assumptions or guesstimates of that this might indicate I had a reasonable pre treatment T level or has the anti androgen for 8 weeks skewed the figures so much it’s meaningless?

[Tall_Allen]

No, you can't make assumptions as to what it was, but why is that important? 2 years of ADT is SOC with external beam, but IDK how HIFU changes it.

[SimMartin in reply to Tall_Allen]

It’s important only in so far as I am struggling with the constant pressure that low T is a danger in the longer term for other cause mortality such as CVD, bone density (I am already pre treatment osteoporosis in spine and osteopenia in neck of femur albeit not terrible but I instigate this DECA NOT the medical team and am taking a biphosphonate weekly to mitigate any extra BMD loss on the ADT. Also my muscle loss issues.

So if I do the full 24 or even the recent slighly uncertain 18 months ADT with IMRT will my T return sufficient to mitigate ongoing low T sude effects and possible exacerbation of my other issues - and in time time frame?

Of course IF it does come back quicker will that trigger a quicker test of whether the treatment had succeeded or I’m in to the BCR and then back on the ADT anyway!

Just trying to weigh up what to do with the best guessing and research available- all complicated by my failed HIFU - but that was on the side where there was 3+4 - the G9 popped up in the other side after 2 MRIs and targeted biopsies found no positive cores - so don’t think the HIFU is relevant- other than they told me it meant u couldn’t have bracy … apparently!

[Justfor_]

I had a T baseline of about 850 and after dropping an extreme count above 3000 that may have been a lab error, my T under various miniscule dosages of Bicalutamide ranged from 1600 to 2500 (average for N=10 counts is 2027, standard deviation 676). FYI, I am currently taking in a month what you were taking in a day and my latest T count was 1557 ng/dl. But, I am also taking Avodart that is known to rise T on its own. Consequently, my best guesstimate regarding your baseline T spans from 450 to 600 ng/dl.

[SimMartin in reply to Justfor_]

thanks for that - I guess it’s just uncertain but also it kind of answers the question that my pre treatment with bical was probably no overly low.

[Mgtd]

If I read you first question correctly you were concerned about T recovery. Age is a factor and then length of time on ADT followed by type of ADT - Shot vs oral. Oral seems to recover faster.

I am the same age and I suspect it may not recover. I had shots for 6 months and it may take up to 12 months or more if it recovers. I started at a baseline T of 684. Currently T is Less then 7.

You need the ADT to suppress the cancer but with your other issues I understand your concern with low T.

After the time you referred to on ADT you could initiate to increase your T by getting shots. There is really no major difference to getting T shots and having it return naturally. That is what I understand.

In your case you are fighting a multi front war which makes decision making difficult.

Good luck and talk to your MO.

[SimMartin in reply to Mgtd]

thanks - yes a milt front war or maybe campaign. As a psychologist and working with medics and having been trained in research as well as working clinically I am only too aware that the research is just that and in individuals it can and often is not easy to manage decision making.

Trouble is my MO would have had me stop at 6 months but I am used to being an odd outlier with my severe polio and given it’s a rare doctor that has ever seen a polio case I am basically the only expert on me.

I do therefore value individuals experiences as useful and supportive to me not feeling alone, especially if I disagree with the medics. So thanks for your input - much appreciated