What to expect.....

Hello Evanescent and welcome! Wow! You have a lot going on right now! I will try to answer some of your questions from the point of view of our own experience and emphasise that we are not prostate cancer medical experts!

The need to check the testosterone level. Some of the people posting here have this checked alongside the PSA check. Others, including my husband, don’t. I queried this with his oncologist. He said that if the testosterone remains at normal levels then the only recourse is surgical removal of the testes. It is only worth checking the testosterone if the patient is prepared to have this irreversible surgical procedure. At this point my husband turned a ghastly colour of green/ white and said he would never agree to that! End of convo!

The length of time for HT. this is something that has taxed us. Without knowing whether your Gleason score is 4+3 or 3+4 it is hard to determine the aggressiveness of your cancer. My husband is 4+3 which is classed as intermediate to high. He is also T3a. He has been told different lengths of time from 6 months up to 3 years. There is evidence supporting 6 months for low risk and 2-3 years for high risk. Intermediate to high research has not been published as far as I am aware. He ‘served’ 18 months - finishing in May thi year,

man boobs. My husband found that the bicalutamide, taken for just one month as decapeptyl was being introduced, made his nipples tingle uncomfortably. This subsided after the bicalutamide stopped. He then started ‘plumping up’ around the boobs and waist. He has not ‘plumped up’ to need a bra or to need to conceal, though! I did see one man at a local support group who was wearing a very tight fitting t shirt and my attention was immediately drawn to his chest. So, if you are similarly affected and self conscious, I  would recommend avoiding tight fitting t shirts!

re recurrence. There is a risk of this whichever treatment pathway you choose - ie radiotherapy with hormone therapy or surgery. Pleese note that hormone therapy alone will halt the progression of the cancer for a time ( this time varies but the cancer learns how to escape the control of the ht). It is the radiotherapy that kills off the cancer cells. The problem is that microscopic and undetectable ( by scans)  cancer cells might have escaped outside of the prostate and travelled around the body and live to fight another day. So, there are no guarantees but there are good success rates in achieving a cure if the cancer is caught early - as your results indicate.

HTH and I hope all of your forthcoming procedures go well

Thanks for the very quick reply. I guess I need to keep reminding myself that I have a long drawn out battle ahead.....I recognise the feeling of tingling which seems to occur randomly....good to know that it should subside once the Bicalutamide is washed from my system.

Good Morning Ian (evanescent)

A warm welcome to the Macmillan Online Prostate Cancer Community - I am sorry to find you here.

There's not too much to add to the cracking reply above from Worriedwife apart from to say we don't all get all or any of the side effects from Hormone Therapy. Two points I would make are:

* If you are worried about gynecomastia (man boobs) you can have a word with your team about ways to reduce the growth - it's best to do this now.

* Below is the link to our information regarding hormone therapy:

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/hormonal-therapy-for-prostate-cancer

I hope the above help - if you have any further points I /we have missed please feel free to ask them.

Best wishes - Brian.

Good morning and welcome  evanescent 

WW has answered most questions extremely well. From a personal point of view I would check that the testosterone is included in the blood test which is normally taken before your next implant/ injection. Very occasionally these can fail, not work so well, or you may not get on with them (in which case an alternative can be given) so for peace of mind it can't harm to have one. The one month timescale is usually for those who are initially given a monthly injection prior to the 3 or 6 monthly one. After that it shouldn't be necessary unless the PSA starts to rise.

Initially you might experience pain in the testicles as the testosterone levels drop but according to my husband this was only temporary. They, along with the penis have shrunk but you can help yourself with stimulation, plus there are drugs you can take to help with penile health to maintain blood flow whilst on hormone therapy. Things should return to near normal once you stop HT and it gets out of the system. Similar for muscle aches and pains as the body got used to the drop in Testosterone.

Most, but not all of the hormone therapies can result in man boobs and my husband has developed a nice pair, but he has been on HT for 4+ years as he is T4. Not everyone does but if it worries you then there are solutions but you have to speak to your doctor sooner rather than later. Once formed they will not reduce once you have finished HT. Concealing is not necessary, no one would notice unless you emphasise it and I have seen many men on the beach sporting a larger pair which no one takes any notice of.

I doubt that you will be put on HT permanently with your statistics, but how long will be up to the doctors. Just be reassured that things are under control. Your first priority is to have the surgery and recover from it.

The hormonal moods could be a longer term problem, just keep an eye on things as I believe having heart issues can have a similar effect - just don't suffer in silence as things can be done.

Fatigue is a common side effect, combated by exercise, but I would check what exercise is best for you as you recover from surgery.

It is premature to start thinking about 'what next '. Just be reassured that there are plenty of options at the present time with plenty more in the pipeline.

I wish you all the best for your upcoming surgery and a speedy recovery.

Thank you, Alwayshope some excellent advice provided....I had also heard about being emotional post cardiac surgery and am prepared for it too.....thanks for the best wishes