Stopping Hormone Therapy? Decisions, decisions

Hi Mynameisearl

You don't say what the original stats were and was it contained in the gland.

Thing is u won't know the success of Radiotherapy until u come off HT.

So yes why not give it a go, it's always there if you need it again, does the consultant agree with that way forward 

Steve 

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I can only reply from personal experience and with the understanding that everyone’s situation is different. That said, my husband really struggled with the HT and, after 18 months of it was at ‘rock bottom’ with all the side effects and other health problems. At the outset, different professionals had indicated different lengths of time to need to have ht - 6 months, 2 years and 3 years. The oncologist stopped the HT at 18 months. There seems to be no set rule for the length of time for ht for prostate cancer classified as intermediate to high risk - as my husband was. There is plenty of evidence for low risk and high risk cancer. So, we stopped at 18 months as advised and have concerns that it might turn out to have been too soon!

Hello Mynameisearl 

Welcome to the group, although I am so sorry to find you joining us. I am sorry the surgery didn't work out. Did you have negative or positive margins from the histology?

So the theory is Hormone Therapy removes your testosterone (the cancer's food) and the Radiotherapy then kills off the sleeping cells (simple!).

Once you've had radiotherapy, your nadir or lowest PSA should be 18 months after the Radiotherapy has been completed. In your case you are on undetectable PSA so - happy days.

I don't see anything wrong with stopping HT and testing you PSA every 3 months. You can always go back on HT but really you don't want any further rise as the Radiotherapy should have done the job once and for all.

I am on intermittent HT but I still have 95% of my Prostate (the NHS keep taking bits) but my circumstances are very different from yours (click my user name or avatar to read the full story).

i hope the above helps.

Best wishes - Brian.

Well you’re not the first person to ask this question on this forum. It keeps coming up. For most the issue is the side effects, which is fair enough. So get off the HT.

On the other hand, the last thing you want to see is a rising PSA. So no! Stay on the HT.

What you need is a crystal ball.

I would want to stay belt and braces and get your mind off the side effects and onto years of no cancer growth.

But it’s up to your team to figure out the risks.

Good luck

Wow ….many thanks for taking the time and effort to reply. Much appreciated!
You have given me more help/feedback in an hour than my local support group, consultant etc. in the past 18 months.

I will fill in some of the blanks:
-initial PSA results were An 8.3 and a 9
-Gleason 3:3 updated to 4:3 after the op.
-margins confirmed clean after op.
-various scans revealed nothing despite PSA of 0.2
-then 7 weeks of Radiotherapy
-followed by HT (now at 6 months)
-PSA currently <0.1 undetectable.

That is me up to date.
My inclination is to stop it providing I can go back to HT if there is a prolonged PSA rise.

Yes …crystal ball please!

Ok, so all low really, surprising in a way that the surgery didn't do the job but hopefully RT has finished it off.

Therefore give it a try coming off the HT.

Does the specialist agree with that?

Steve 

Thanks Grundo ….appreciated 

Thanks Worriedwife ….yes, it’s all concerns! Best of luck to you and yours.

Just one other question.

Was there only one PSA test done between surgery and radiotherapy starting?

Steve