Prostate cancer

Hi Kid,

That is very sad but welcome to the club. It may be an idea to add more details to your profile, for instance the psa readings and other scores, and whether it has spread. This will be helpful to all the guys on this forum who will give you so much support and information. As for us girls, we can all support you as we have husbands going through it too and if you need any help from us, just give us a shout. 

Best regards

Gina

Hi Kid, I’m so sorry to hear about your husbands diagnosis. It’s a horrible time for you but I hope you find the same support here that I have found! There are some lovely, kind people - all at very different stages of the journey. I don’t think I would have coped without them. My husband was diagnosed last autumn. He started hormone therapy in November and finished his radiotherapy on Saturday. 

take care of yourself and know we are here for you x

Hi Kid - Sorry to hear your news. I thought I would reply from the male side of the club!! I have and still am on HT and completed my RT in early February. Life is interesting to say the least and if you want to follow my story click on the icon of the beach. Your husband is in good hands if he has started on the Hormones and this should stop any cancer  spreading. As with all of us men he will find your support invaluable.

If you have any questions feel free to ask.

God luck with your husbands journey - Kind Regards - Brian,

Thank you so much for your support 

Can I just ask please how was your husband after the radiotherapy sessions finished?

Did he have diarrhoea halfway through?

will he still have to continue on the hormone treatment ?

Thank you 

Thank you for getting back to me, I clicked on your beach icon and read your story, gosh you have been through a lot.Thank you for giving me an insight as to what I can expect, I wish you luck for the future, watch this space .

Hello Kid

In response to your questions, my husband is absolutely fine after his radiotherapy! We both got very tired during the RT because of all the travelling and the difficulties in parking at the hospital. I was also very very anxious about side effects. He complained of headaches the first few days but was advised to drink more and that seemed to help but, of course, he needed to go to the loo more! He also complained of feeling bloated and have a lot of wind. Again, they advised him on diet and that seemed to help. He's had no diarrhoea, no urinary retention - none of the horrible symptoms we were warned about. The drawback now is that they have advised us not to go abroad for 6-8 weeks because the side effects might still kick in - they haven't yet and he seems to be in a really good place mentally and physically.

We were somewhat puzzled about the hormone situation! First of all the prostate cancer nurses told us he would need the hormone therapy for 2-3 years. Then the oncologist said just 6 months. Then the oncologist said 18 months! We queried this and he told us that the intention is always to 'over treat' rather than under treat and his best advice is to go with 18 months from the start - ie another 12 months. We took his advice. Apparently my husband falls into a grey area as far as research goes for the length of hormone therapy (T3a N0M0 Gleason 4+3=7) . More serious grades and less serious grades have been well researched. Unlike a lot of contributors here, he has only ever had one hot flush (he didn't like it!!!!). His hair is getting thinner! He has been doing regular exercise as advised.

I don't know which hospital you are using but our hospital oncology department was brilliant. The only two days there was any delay in the treatment was because of patients before him holding things up. One day had to be cancelled due to burst pipes flooding the department. He had a weekly review with the radiotherapists and 2 consultations with the oncologist during the treatment. Every time he went for a session they asked him if he was ok and whether he had any problems.

I got myself into the most dreadful state of anxiety, tears, insomnia, depression - the whole lot but, looking back, I should not have !

The one thing I looked at was the Space Oar. This is a gel like substance they insert between the prostate and the bowel to protect the bowel from the rays. It is proven to be useful but NICE won't recommend it for NHS use. We could have got it done privately at a cost of £6000 but my husband did not want it! I thought this was a mistake but I had to go with what he was deciding about his own body. He said he could not face another procedure and could not justify the cost! I wasn't bothered about the cost if it was going to prevent any problems. WE agreed to disagree!

I hope this helps but please feel free to ask any questions and I will try to answer. Also, please take care of your own wellbeing. This is a tough time for our menfolk - that is recognised by the medical profession. But, its a really tough time for us wives/partners and this is far less well recognised or acknowledged.

Dear Worried wife

I was following you and surprised that your old man managed to start his RT so soon after HT. As I am on a similar journey, I commenced HT in December, I am curious to know did the Oncologist wait for his PSA to fall below 1 before starting RT? Also did he have 20 sessions?

Thanks in advance

Rens

Hello RENs, thank you for your interest. We were told from the start that my husbands radiotherapy would be 3 months from the start of the hormone therapy and this, of course, happened. There was no mention of monitoring his PSA before starting radiotherapy. Quite coincidentally he needed a blood test for an unrelated condition in January so he asked for his PSA to be checked at the same time. His zpSA had dropped from hovering around 10 to 0.29 just about 8 weeks after starting HT. nobody from oncology has mentioned the need for the PSA to be below 1 before starting radiotherapy. He is T3a N0 M 0 Gleason 4+3=7.

and yes, he had 20 sessions. I don’t think we would have had the stamina to get through more!  I actually don’t think the radiotherapy causes the fatigue as much as the travelling to and from the hospital and the mental anguish this has caused us! We are both fairly cream crackered this week!

as others have said here, do follow the instructions oncology give you to the letter - empty bowel, full bladder, diet etc etc. tell them if you are experiencing even the slightest issue and they will advise you how to resolve it. My husband was very headachey each afternoon and they told him to drink more he did and it helped! He had a lot of bloating and they gave him dietary advice and that helped. I obviously  can’t speak about every hospital but I don’t think he would have got better care from oncology had we been treated privately. 

good luck and let us know how you get on!

In the UK, Oncologists usually schedule at least 3 months, and sometimes up to 6 months on hormone therapy before starting radiotherapy. There are some research papers which suggest getting PSA down to 1, and one paper suggests down to 0.1 before starting radiotherapy, but this isn't usually measured unless you specifically ask, and they just go by time. My PSA started off at 58. It was down to around 5 when oncologist started talking about booking radiotherapy, and I asked to wait longer, aiming at 0.1, which he was fine with, except he said I mustn't wait unless PSA is still dropping rapidly and not in any case longer than 6 months, and not everyone's PSA will go that low. I looked at the rate mine was dropping and estimated it would be 0.1 at 5 months on hormone therapy, so we booked it the radiotherapy for then. In the event, the radiotherapy came through a week earlier than I expected, and my PSA was 0.12 which showed my calculation was pretty much spot on, and I was happy with this.