Second opinion

Good Morning Castor

So sorry to hear of your issues and I am fully aware we are all different. I am the same Gleeson score as you and my full profile is updated.

I am on hormone treatment alone so can't advise you how to go forward. I can confirm that the hormone treatment works and with the support of my wife I have come to terms with the side effects and now they don't bother me (11 months in). The major change was the start of the hot flushes and since I have stated taking sage tablets these have all but gone.

Good luck with which ever option you take.

Hello Castor. I am really sorry to read about what you are going through. My details are on my profile and I hesitated to reply because, as Millibob has said, everyone is different.

I chose the option of HT and RT over surgery because of the invasive nature of surgery. I do not regret that decision because those therapies were not as bad as I had envisaged. There is a lot of information available but, it seems to me, it is easy to be drawn by the worst case scenarios.

The hormone therapy has given me a tendency towards hot flushes but they are brief and don’t really bother me. There are remedies available, e.g. sage tablets and evening primrose oil, but I have not tried them. For me, the complete loss of testosterone, together with any sexual feelings, desire or function, was a sad loss and it needed some personal psychological adjustment. After a year, I am reconciled to the change. I have stayed around the same weight although I am now a little fatter. I have lost some muscular function and try to stay active. I became rather more tired and moody. I have learned to be careful of being impatient and snappy. All manageable, I’d say.

I had twenty fractions of radiotherapy in July 2022. I was dreading this but the mechanics of it were manageable. The hospital staff were amazing, and rather inspirational. You get used to the daily routine including the bowel (empty) and bladder (full) preparations which can be a bit of a drag. The staff are, of course, completely used to helping you through it. I followed the diet advice to the letter and I had minimal and very short-term side effects.The one notable exception was that, three weeks after the last dose, I was hit by profound fatigue. This, in conjunction with the effects of the hormone therapy, has been challenging.

Three months on, I am still careful not to take on anything too ambitious and I nap for an hour or so most days. I live alone and have a tendency to be reclusive anyway. If you are married and have a more outgoing attitude I think that could help with recovery. For me, it’s not awful, it just requires patience. I have lost one or two friends, I think, through going on about prostate cancer too much! I have been able to trust my oncologist completely. 

My brother’s recent experience was similar. I am on Prostap but he was given Zoladex. He did not really notice the side effects apart from the loss of testosterone. He sometimes experiences some discomfort but I believe that is because he was given brachytherapy before the radiotherapy. He is a year in front of me with all this. He has recovered pretty well and has taken up some active and absorbing hobbies.

I do not know if any of the above will be helpful but my thoughts are with you and I wish you the very best.

Hi Castor.Sorry to hear of your concerns, it's a worrying time.

I was 71 when diagnosed in 2018 as T3A N0 M0 with a Gleason score of 4+5 = 9 and a PSA of 15 by the time treatment started. I had three years of HT and 20 sessions of RT in early 2019. It's now nearly 18 months since my last hormone injection.

Yes, it was tough at times and RT was quite exhausting but with a lot of determination and family support I came through it. I was 75 in August and now swim a mile twice a week, walk about 50 miles a month and go coastal rowing as often as the winds and tides allow.

My PSA was undetectable for three years and had risen to 0.2 at my last test in June this year. The oncology nurse at the hospital has told me that this is normal and they will not intervene unless my PSA goes above 2. My next test is in December so then I'll know how well the treatment has worked.

Hi Frederico,

I am glad you took the time to reply and cover all the points of my anxiety. As you and Millibob say, we are all different with different problems to be covered.

The weight from hormone treatment could be a problem for me, due to my high blood pressure. I can hardly walk over long distance because of my peripheral neuropathy that affects the bottom of my foot. I use  a home bike for exercise.

I can imagine how difficult it must be for you to go through all this on your own and not be able to discuss it with others.

I will now start ht  and will follow with 6 weeks of daily RT so I expect they will explain the procedure. I am not too keen on brachytherapy because they say it can lead to urine retention which has been an old problem for me due to previous bladder difficulties.

Finally I would like to thank you for taking the time to cover all the points of concern, and  would like to wish you speedy recovery.

Thank you Millibob for the encouraging words. You cannot imagine how helpful it is  for someone who is only just starting to hear that the hormone treatment works and that the side effects are not as those stated in the literature. As you say, we are all different and we can expect different hills to climb. I am glad that your side effects don't bother you anymore and I wish you full recovery very soon.

Hi  Seamus,

Considering your Gleason score was 9 (4+3) when compared to mine at 7 (4+3) your results are very encouraging. Of course, I cannot reach your level of performance in exercise due to my neuropathy but I will certainly try to maintain an acceptable level of fitness so as to avoid too many undisìreable events.

Your results have encouraged me to go ahead with both ht and rt so that I can look forward to a reasonable healthy future, and I wish you good health for many years.

Castor said:

Your results have encouraged me to go ahead with both ht and rt so that I can look forward to a reasonable healthy future, and I wish you good health for many years.

Great news. You will probably be on HT for  few months before the RT starts. This will control the cancer and shrink the prostate making a smaller target for the RT.

Let us know how you get on.

Hi Castor. That's great news that you have made the choice of how to move forward. It's a different journey for us all but the aim is to keep away from the final destination as long as possible. I find that with a positive outlook and support from all sources, written and spoken I have the strength and willpower to fight and you know that's helping me to keep going!!

I wish you well and hope everything works out for you.

Kind Regards - Brian.

Good evening Millibob,

You say that you only had hormone treatment even though you have the same Gleason score. This is very encouraging because I have also been thinking that ht could be enough given that neither bones or lymph have been affected. My concern is to minimise the side effects, especially those from radiotherapy. This could be a good point of discussion with my  doctor.

Good Morning Castor

I have been on hormone treatment alone since January 2022.  I was admitted to hospital with urine retention so on discharge I had a catheter fitted.

I took the option to have this removed as soon as possible but required a TURP operation to "renew the plumbing" and this was done on 4 November 2022 leaving the hospital on 5 November 2022 learning how to wee again. In all honesty it is going great - there was no pain to the operation and I am slowly regaining control!

I have all the side effects of hormone treatment, growing boobs, mood swings, low days, hot flushes, loss of hair and shrinking testicles and penis, My sex drive has gone out of the door and the door has been closed behind it!! HOWEVER, with the help of my wife, willpower, a positive outlook and sage tablets I have no issues in dealing with it.

At the outset I thought hormones alone won't cure this but it will stop it. Reading on here and from other sources I can expect a course of radio therapy in the future, this comes after the hormone treatment has stopped/reduced the cancer growth. At the original multi discipline meeting I was told "hormone treatment for life".

I assume it isn't possible to give radio therapy whilst I have an indwelling catheter and as this has now gone, I find I have a meeting with the Consultant to review my future treatment tomorrow morning at 9.30!

I will keep you posted as to my next step on my journey.

I appreciate this probably isn't the answer you were looking for but I hope it helps in your decision making and I wish you the very best of luck which ever way you go.

If you want to know more - just ask.

Kind Regards - Brian.