Struggling on Hormone Therapy

Hi,

I’m on Prostap and trying to live with side effects. It’s certainly no fun as this drug is trying to turn my body into a woman’s. I feel my strength being sapped away each day and the puppy fat piling on. I find it difficult to try do all the active things I’ve previously enjoyed doing. I particularly struggle with hot sweats which wake me up every 1-2 hours during the night. I’ve contemplated stopping it, but seriously, I know that I need to keep on with it, I don’t think that they’ve prescribed me it for the fun of it. I’ve got 2 and a bit more years of it to go, need to learn to live it and I’m sure that with a bit of determination I can deal with it.
Stick with it, good luck and all the best.

Spongebob

People have stopped HT early. It's a gamble and if you get it wrong, you'll have little choice but to go back on HT for the rest of your life.

Given that, I decided to stay on HT longer than my oncologist said I had to, just in case it gave me an extra percent chance of a cure, but that was easy for me as I wasn't getting any side effects that I couldn't put up with for a bit longer in the hope of never having to go back on to it.

I have come across men at the opposite end of the scale - i.e. finding the HT so dire and depressed they are likely to have taken their own lives before finishing it, and in this case the balance is definitely shifted -longevity and quality of life is likely to be bettr by coming off it sooner.

Another option to discuss with your oncologist might be to try switching to Bicalutamide (with low dose Taxmoxifen). This has fewer side effects as it's a less punishing HT which works in a different way. It's more likely to cause breast gland growth and pain, hence the Tamoxifen to counteract that.

The prostate does prefer DHT to Testosterone (although it's not accurate to say that DHT causes prostate cancer). Androgen receptors which prefer DHT manufacture it in situ from Testosterone as it's used, using the enzyme 5 𝞪-reductase.

There are 5 𝞪-reductase inhibitors such as Finasteride and Dutasteride, and it sounds like they'd be perfect to stop prostate cancer without the full set of side effects of losing Testoserone. Well, they've been tried and don't work. They slow down the growth of non-cancerous prostate cells so they're used to shrink enlarged prostates, and they even reduce PSA which initially looks promising, but they don't have any effect on cancerous prostate cells which simply switch to use Testosterone and probably grow more androgen receptors to compensate, which we know prostate cancer cells can mutate to do. So, very nice idea, tried many times, but sadly doesn't work.

Edited by member 23 Feb 2024 at 11:31  | Reason: Not specified

One is support of Nigel the OP. I too went through HT and RT due to a PSA increase after prostatectomy (also reaching 0.3) and on referral to oncology the recommendation was for just 6 months HT with RT during the second 3 months. In the event there were delays (partly Covid, partly the need to pause for some other investigations) and I had 9 months HT. I agree that being on HT was something that slowly grinds you down and the shorter the better in that respect. And my experience does suggest that the "right" length of HT is not something absolute.

The second discussion in parallel is about whether it is necessary to follow the consultant's advice, led by Lizzo's enthusiasm for alternative approaches; I am a bit worried given we aren't hearing the patient's own views in that instance. My view is that Nigel's oncologist is both far more expert than anyone here and has much more detailed information about Nigel's personal clinical situation, so probably has good reasons for the proposed treatment. However the fact that there is variation in salvage treatment means I think Nigel would be justified in discussing with his oncologist how much benefit another year on HT will bring.

(For what it is worth, my understanding is that while RT can be effective on its own it is often more effective if the cancer cells have been stopped from dividing in preparation using HT. However if there is a risk of recurrence after RT due to particularly rapidly dividing cancer cells, or because there is a real possibility of cancer cells that are already distant from the prostate bed, then longer HT treatment is justified to minimise the chance of recurrence. As Andy says, if the cancer isn't eliminated Nigel is likely to find the next approach will be HT for the rest of his life - much worse than the 2 years currently recommended).

You haven't given a complete picture of your husband's general health or cancer [and I don't know how old he is though you might have mentioned it somewhere] but based on the above I take it he's G8 t3b, so there's spread beyond the prostate.

Given scans have yet to show up anything it's probable that he's looking at prostate bed cancer at least.

You and he will have to make a decision if that's the case because neither conventional HT nor the PATCH trial [used as intended] remove cancer.

Your comment that after his next psa test he will be on his own is pretty weird!

Jules

Edited by member 26 Feb 2024 at 01:25  | Reason: Not specified