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Hormone therapy: one alternative to ADT injections

Almost two years ago I was diagnosed with locally advanced PC with a Gleason score of 9/10. After doing some research I declined the urologist's offer to remove the prostate and opted for treatment of ADT + high dose brachytherapy boost + shortened course of external beam radiation.

My ADT was monthly injections of degarelix which I tolerated fairly well according to my oncologist, in so far as I didn't have hot flashes very often. On the other hand I did experience the depletion of physical & mental energy that many would be familiar with.

I also had skin irritation and swelling at the injection sites, which were tolerable until I began external beam radiation. Both times that I had injections during the course of EBR treatment I had huge site reactions that caused great concern for the radiation staff and considerable discomfort to myself. On top of this, I was beginning to have hot flashes much more often and the cumulative effects of EBR were beginning to hit me.

The only alternatives to degarelix offered to me were other types of ADT injections with longer intervals. I became worried about the prospect of having a bad reaction to an ADT drug that lasted 3 months and started looking for other alternatives.

Around this time I saw an interesting comment by someone in an online discussion about the side effects of ADT. He said that he was using estradiol instead of the standard hormone therapies and he wasn't experiencing the problems that other men were writing about.

So I did a web search and discovered that a clincal trial has been running in the UK since 2007, in which estradiol patches -- exactly the same hormone replacement skin patches that women use--- are employed to suppress androgen in men who have locally advanced or metatastic PC. The trial is called PATCH, which is short for Prostate Adenocarcinoma Transcutaneous Hormone trial programme.

I found medical journal articles about the PATCH trial that said men experienced better quality of life using the patches compared with standard ADT, while still having their testosterone suppressed to the recommended levels. 'Better quality of life' included far fewer hot flashes, and not so much loss of physical energy. And for me a big plus would be no more injections.

I sent my oncologist the literature and asked him if he would prescribe estradiol for me instead of the injections. To his great credit he agreed to do so, while at the same time making it clear that the decision was my choice and not his recommendation (in order to avoid the considerable professional risk he could be opening himself up to by prescibing a non-standard treatment).

So after 8 months of degarelix injections I started on a course of 10 months of estradiol patches to complete my 18 months of ADT. The first month of patches was a little bumpy --- you have to remember that I went from having men's hormones to zero hormones to women's hormones -- it wasn't terrible at all but a little strange, the worst of it being my memory got really bad for a little while before normalising.

The hot flashes disappeared within 2 weeks of starting the patches and never came back, and my physical energy improved somewhat. Mental energy was much slower to improve but it did, somewhat.

But the unexpected biggie was that I began to feel really good in myself. On the degarelix injections and zero hormones I felt that I was getting old really fast and being hollowed out from the inside. The patches reversed that completely.

And my skin and hair improved out of sight! Also: my testicles stopped disappearing and began to slowly get bigger, and I started to regrow the pubic & underarm hair that had disappeared.

On the other hand, I began to put on weight in womanly sorts of places such as calves & thighs and, yes you guessed it, breasts & nipples. Nothing that would get me a job at the local club, but just enough for me to feel a little self-conscious about it.

To me these were nothing compared with how much better I felt physically and mentally. If I were faced with a lifetime of androgen suppression, I would choose estradiol patches without hesitation.

Of course I cannot recommend estradiol to anyone and everyone, if the idea interests your please check with your medical team and do your own research.

PS all my test results while using estradiol and since completing androgen suppression were good, with PSA undetectable. And my testosterone bounced back as soon as I stopped the patches.

  1. Hi thank you so much for taking the time to share your story with us. It is so helpful for our community to hear people's journeys. I am so glad to hear your PSA is undetectable. I hope you continue to feel well. Jill, prostatecancer.net team

    1. could you explain why you declined surgery?
      i am trying to figure this out and am fairly clueless
      thanks

      1. Hi genghis. There were two reasons I declined surgery. The first one is that my prostate biopsy didn't go too well from my point of view. I wasn't able to urinate after the procedure and I had to wear a catheter for 7 days afterwards (which is no fun believe me), plus I had lots of swelling & discomfort etc. So this put me off the idea of surgery to begin with.


        The second reason is that I started reading medical journal articles that reported large scale studies comparing the long term outcomes of different prostate cancer treatments for many hundreds of men. The studies showed that for men like me with locally advanced cancer (ie advanced within the prostate but no sign of spread elsewhere) and very high Gleason scores of 9 or 10, surgery in the first instance does not necessarily lead to the best long term outcomes. Part of the reason for this is that in around half these cases the cancer comes back a few years after surgery, typically around the bowel region, and so the men need to undergo radiation anyway. Plus surgery often leads to fairly significant lifelong problems such as incontinence.


        So for my particular situation, the studies showed that ADT treatment for 1 to 2 years plus a course of external beam radiation plus what is called a brachytherapy boost showed the best results for the first 10 years after treatment. After 10 years or so there was not much difference between surgery or radiation, in terms of life expectancy or recurrence of prostate cancer. The brachytherapy boost involved just one session under full anaesthetic of direct radiation into the prostate via needles, which was done before the course of external radiation.


        So I concluded that from my reading that surgery was not the best option for my particular situation. I had an appointment with a radiation oncologist who confirmed my conclusion, and referred me to a different hospital that was able to provide me with the course of treatment that was best for me.


        Of course for men with different diagnoses the best options may be different to mine. However I would certainly advise anyone newly diagnosed with PC to do your own research and ask for 2nd or 3rd opinions, because typically a specialist will recommend whatever treatment they are specialised in, which may not be the best treatment for you.


        I hope this helps.

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