My partner 47 diagnosed with advanced prostate cancer.

Good Morning Alwayshope 

Thanks for that. It's convinced me that I am now a fan of "long term Hormone Therapy". (It's a bit late to change my mind anyway as I have had it for 3 years already now!!).

As an aside at my MDT meeting I was "HT for life". It was only 12 months later after my TURP operation and I was passed to Oncology at Christies that after reviewing my MRI scan I was HT for 3 years and "Curative Pathway" (my favourite phrase!!)

Best wishes - Brian.

First of all and in order not to detract from the original post , Orvy, I’m so sorry to hear of your husband’s diagnosis at such a relatively young age. All of us wives and partners posting here know just how difficult it is to take the diagnosis on board and cope with the fear and anxiety and the unknown. I do hope that the treatment goes well and kicks the cancer into the long grass.

second, thanks very much to AH for posting the link to this research. The length of ht is something that has really taxed us! My husband was told different time periods ranging from 6 months, 12,months, 18 months and 2-3 years. He is T3 N0 M0 and treated with the intention to cure his Gleason 4+3 tumours. We got to 18 months in Nay with him at an all time low after having a medical emergency due to an adverse reaction to a drug change for a non PC related condition. He poured out an absolute tale of woe to the oncologist in May, saying he couldn’t live like this any longer. He was advised to discontinue the ht. since then he’s been going from strength to strength.

however, since then I have been obsessed with the fear of recurrence!

my reading of the research to which the link refers, is that this is a very small cohort of men - just 177 in each arm of long or short term ht. It also refers to intermediate or high risk patients. My husband is classed as intermediate to high risk! So, although the research paper is reassuring on the one hand, it does not solve my own concerns on the other!

I do note that the paper starts with describing ht as a burden for many men. I know there are many men here who have no choice but to keep on with it for the rest of their lives and I salute their courage and perseverance. I’m not sure that my husband could tolerate it but that would be his choice. If he has to, then is it possible that a different ‘brand’ might suit him better than the decapeptyl? Over to our wonderful, self confessed Nerd :) What would we do without you?!!!!!!

Hi WW.

Unfortunately most of the injections and implants seem to have similar side effects but some with lesser effect on cardiovascular events than others. The problem with them is also that once administered they are in the system for 1, 3 or 6 months. There has been a tablet which I have been keeping an eye on and has finally been approved by NICE (last month I think). It works in the same way as the Degarelix but because it is a tablet taken daily it can be stopped with immediate effect and recovery should be a lot quicker. Relugolix, like Degarelix, acts within days to reduce the testosterone without the flare. 

https://news.cancerresearchuk.org/2024/07/19/take-at-home-pill-prostate-cancer/

Another option at the moment for those with a problem having the injections/ implants is to take Bicalutamide at 150mg . It is possible to have the second generation antiandrogens as a monotherapy as well. OK the link I have attached is for non metastatic prostate cancer but it does show that work is ongoing in this scenario.

https://www.targetedonc.com/view/enzalutamide-with-or-without-leuprolide-betters-undetectable-psa-rates-in-cspc

Also for metastatic prostate cancer we have this research.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10914526/

I haven't looked at the other second generation antiandrogens but presume that similar work is being done.There is also interest in using radioligand therapy to attack the cancer cells in a direct manner.

Most trials start off with small numbers of participants but, if showing promise, then they are usually taken up to be included by more countries.

Hello AH - brilliant response! Thank you so much! I will bear these in mind.

 Orvy , I just wanted to check how you are both doing.  The thread seems to have moved in the HT direction and I didn’t want you to think that we were ignoring your post.  Please come back with any questions or concerns either of you have and we will try and answer them as honestly as we can. 
When I was first diagnosed I told all my grandchildren that I had cancer (then aged 3 to 7) much to my wife’s horror.  I tried to drop it into a conversation as a matter of fact, rather than make it a big deal (which it actually was to me).  At that age they are so resilient and after a few minutes of questions they each went back to playing.  If they ask questions now or see me taking meds it is quite routine.  It has worked well for me, but I realise that everyone is different.  Best wishes to you both, David

Good point David2017 

We have rather gone off topic with all the HT talk.

Orvy  Here's a link to our information on telling children someone has cancer. I hope you find this helpful:

https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/talking-to-children-and-teenagers-when-an-adult-has-cancer

Best wishes - Brian.

Hello, Thank you for asking how we are doing. I am ok, I am positive one minute and completely devested the next. My OH hadn't needed to see a GP for 20 odd years, no symptoms until May time and now we have this news it's incurable. I am struggling to process it all. The only thing I would say that was maybe an earlier sign was the ED at the beginning of the year. Stupidly I thought it was me and the attraction wasn't there (not that I told him that) he put it down to stress from possible redundancy that did happen in May. He's OK, he seems more worried that he may never be able to have a sex with me and that I may want to be with someone else who can (not true) I'd rather he was here, pain free and living as good of a life as he can with this. He seems ok with whatever they may throw at him in regards to treatments. We are awaiting the full diagnosis once we get the biopsy results and this is playing on mind. We haven't been given a prognosies yet. I just hope he gets years like they said to see our girl grow up. 

That's absolutely fine for the thread to be used to discuss HT  I may find it useful once I digest what's happening

Thank you for the best wishes too

 Orvy , we have all had the diagnosis and have all been in the place where you are now.  It is awful and seems to be all consuming, but as others have said, it does get easier once you have a full diagnosis.  We have every sort of level of PCa on this blog, from very early diagnosis and just watching with no treatment to others who have had a full range of things thrown at us. So please ask anything - there are no silly questions!

One extra piece of advice I would throw in is to both try and be positive (it helps recovery). Look forward to your beautiful girl growing up and you both being around to see it!  David

Hi Alwayshope thanks for the link, always an interesting read. Mr Bw is supposed to be HT for life or until his body rejects it. We do keep asking if a break will happen “intermittent “ use to see if the cancer is active or not,  but his consultant says there’s no point or advantage to stopping and starting (for him) we will keep asking though and see what happens next year.  
Lx 

Thank you. I will be honest I am struggling with being positive. The CNS said it was an extensive spread and we are looking at a high gleason score. They still need to check his bladder and do a full body scan. This week's been tough because he seems to be in pain since they did the biopsy and the injections have caused a bit of tenderness. Also he'd tired, probably due to the pain and having to get up to pee in the night quite a few times. We are now on day 3 of the injections and drs prescribed naproxen so I'm hoping he gets a good night's sleep. It's all come on very quickly since May. I'm dreading hearing his prognosis. I'm just trying to take one day at a time.