Radiation or Surgery

Hi Rens. It is easier said than done, but you have good reason to stay positive. Your cancer is being treated with curative intent, and your treatment choice is sound. I chose surgery with a lower risk case. In your case the radiation and HT has a much better chance of being successful than surgery alone. It isn't an easy path, but take comfort in the fact you are doing all you can to beat this thing.

Stay optimistic that your treatment will be successful,  and keep in mind that today's treatment has remarkable results even with aggressive PC.

It is natural for the mind to drift into dark places in these situations. Just remember you are not alone in this. We are all pulling for you. Others on this site can direct you to groups you can join to talk things over. Best wishes, Stampede

Hi Rens - I know where your thoughts are right now and understand your feelings. Radiotherapy and HT affect us all differently and they have both been used on me with a curative intent - and I am a Gleason 9. The original diagnosis was that the little sods might have left the capsule and I have been treated with Radiotherapy to my lymph nodes as well as the prostate.

As Stampede above says stay optimistic, the treatment has worked for me and although I am on HT for another two years it's much better than the alternative.

By all means let off steam - it's the right thing to do - and if you feel your feelings are affecting your health seek some professional advice.

We are all with you on this journey - and I send you my best wishes.

Brian.

Dear Stampede.

How very kind and helpful.

Rens

Dear Brian..

Thank you for a thoughtful and ever helpful response.

Rens

Hi all - I am also an aggressive Gleason 9 and went the HT/ RT route.My cancer appeared on the scans to be contained but I was given 37 sessions of RT just in case. After 2 months of HT I started to experience numbness in my feet which spread into my lower legs. After medical tests to eliminate all other possible causes, it was concluded that the HT was the probable cause of my peripheral neuropathy and it is permanent. Concurrently, my mood deteriorated and my outbursts of anger increased. This had a detrimental effect on my family life. After 12 months, my wife and I went to see my oncologist who reluctantly agreed to stop my HT treatment early.
Gradually my moods and anger subsided but unfortunately not quickly enough to save my marriage, which in fairness was already on the edge. I wonder whether surgery may have been preferable, but with such a high Gleason, I somehow doubt it. I know I have taken a risk curtailing my HT but the effects were too much to bear.  Six months on, my PSA has thankfully dropped to 0.03 which my oncologist now wants me to track it every 3 months or so. I’ll leave the other physical side effects of RT /HT for another day. 
The combination of RT/HT has definitely given me a new lease of life, for which I am grateful, but at a cost. My GP, who reacted so quickly when I first went to see him, and my oncologists were brilliant. I am eternally indebted to them. My only criticism is that I was not properly appraised of the potential, extensive side effects, especially the emotional issues.  If I had been, perhaps it may have helped me and my family to better manage them, when they appeared.

It is indeed quite a journey and I wish all the best to my fellow journeymen along the way.

Wolf

Dear Wolf

What a valuable, honest and helpful contribution. I am sorry to hear of your trials and tribulations. Although I profess to be a novice, albeit with fully paid up club membership (despite never being a club man) I am drawing a few conclusions from my research:

- seems to me that an aggressive 8, 9 or 10 is going to recur in the majority of cases and therefore the combination of HT and RT seems to augur best. I am sure that others will disagree but logic tells me that once there are 5's in there (I am 3+5) and when a lot of cores are 100% as mine are, there is an inevitability that this cancer will have spread.

- nevertheless, this combination has the potential for many adverse side effects. ED and emasculation are a hard cross to bear, but as you have pointed out there are many other side effects. I have not experienced the anger as yet and I hope that I do not but although only on my first jab of Goserelin, I am a nervous and emotional wreck. I also have swollen feet.

- I am also surprised that my Oncologist played down the adverse effects of HT. Again, in hindsight I suspect that he did not see the point. At my grade, I was facing a hard realty, I needed a harsh solution to curtail my cancer and prolong my life; the adverse impacts of HT and RT would be collateral damage.

Wolf your response and the replies of Milibob and Stampede have been incredibly selfless and hugely helpful to myself and no doubt many others.

Kind regards

Rens

I think many oncology consultants are probably slightly "economical with the truth" as the alternative is not having the treatment. Mine did warn me of some side effects but not about the extreme fatigue that Bicalutamide can bring on.

Hi Rens & Wolf - I am sorry to hear of the issues the PC has caused you both. Being a fellow Gleason 9 I feel I have come off very lightly here. I think due to an early diagnosis.

This HT /RT business certainly affects us all differently and the more I read I wonder if it's the additional medication we take or if it's the actual HT it's self as there are different types - I am on Decapeptyl and it's not been too bad with me. I have grown boobs, have hot flushes (now under control) have the odd "bad" day but my dry skin is my issue.

I just don't know. I agree with you both and Seamus - there is not enough information given on prescription of the drug - it's just here. you need to be on HT / RT!!

Good luck to you both - We are all here for you and wish you good luck with your journey.

Brian.

Hi Rens, Seamus and Millibob, it’s reassuring to finally speak to fellow journeymen and thank you for your kind support. 
Rens touched on the ED and emasculation challenges. I asked my oncologist about this recently and he said it may improve in the next 6 months (that’s an additional 6 since the last discussion) but not completely.  I guess he doesn’t really know for sure either. The things he suggested to help would propel me into a whole new world I hoped I would never see - Viagra is one them. I have a decision to make: try it or just hang up my boots. 

It certainly is a strange disease affecting different people in so many different ways. I would think it’s a nightmare for specialists to know where to start when deciding how to advise each of us about potential side effects. They don’t want to put us off taking the right direction.

By the way my HT was goselerin, which my family describes as the ‘medication from hell’! But that’s my story and shouldn’t be taken as a prescription for others.

Kind regards to all

Wolf

Hi Rens. 

My husband was a Gleason 9 (5+4) and opted for a radical prostatectomy. 

His psa dropped to 0.01 straight after the op but it never was very high. 4.3 but as we learnt at 63 this is raised. 

The radiotherapist sacred the living daylights out of him and we never did get the option to talk to anyone about hormone therapy.

His psa has stayed constant at less than 0.01 for 3½ years but his latest test has turned a 0.03 score up, so we are waiting on his consultation.

We were told when he opted for surgery that there were no guarantees that it hadn't spread microscopically and that it could take 10-15 years to show but all the lymph nodes he had removed were clear. His was a non nerve saving operation, so any hope of erections were gone but what nobody told us was that he could still have all the feelings of a climax without the mess or an erections, so we still enjoy a sex life, its just different. 

This is a long missive to say, that he took the gamble to have surgery and for over 3 years he hasn't had any problems, no side effects (apart from no erections) and we have enjoyed life. 

I think you have to accept your decision and make peace with it but yes, I do think that they dumb down some side effects, or even worse gloss over them. 

I wish you well in your journey and remember, positivity can go a long way to helping with your well being.