Prostate cancer at 49 / advanced

Hi Mcjc, I am not able to give advice but thought to say be positive with the knowledge it is being treated and the chances of success increase year by year. There are a few guys on here who will give more detailed information you want . I was fortunate I guess that at 56 it was discovered and prostate removed seems to have got all the cancer. Be positive and do talk and ask questions you have , this is a good forum for all affected by this terrible disease.

Best Regards Graeme.

Hello Mcjc, I have not had chemotherapy yet, I chose to have enzulatimide first instead and am on 6 monthly hormone injections. I have also had a lot of RT to to chest, spine and prostate. My treatments are on my bio

I wasn't given chemo because, to use the Oncologist's words, "Enzalutamide is kinder".

I was given the option but told that both had the same effectiveness. I chose enzulatimide as I had seen alot of research about it and at the time enzulatimide was only given on the NHS to newly diagnosed patients while covid was around. I was told by two consultants that if enzulatimide gets pulled and I'm already on it I'll still receive it and chemo will always be available.  A few weeks after starting enzulatimide it got approved by NICE for permanent use on the NHS which is great news.

Hi Paul82 

I am sorry to hear about your diagnosis. I was under the impression that I would be one of the youngest in age group with prostate ca . I was lucky or may b a bit of medical knowledge and thinking out of the box that made me have the psa test without any symptoms. I was also given the options of enzalutamide vs chemo . The downside of enza was we need to use for at least 2 years , had a side effect profile that can cause seizures ( that made me jittery) , but the upside was less toxic than chemo . Also studies suggested that chemo upfront was better tolerable than chemo later when body is not that fresh after being ravaged by other meds / treatment. Also chemo was for a shorter duration of time like 6 cycles rather than enza . But I agree at the time of covid at peak enza was good option Bcos chemo has problems with fall in white cell count and immunosuppressant ( I got admitted as well !! Nerves racking ) . 
I hope your scans will be fine & I certainly think so with your psa almost undetectable now . Mine was Gleason 9 & high grade and moved up till nodes . So RT planned after chemo. But you have had RT before enza ? Is that because there was spread to ribs or bones ? 

What side effects can I expect with RT ? Thanks 

I suppose I trump you there then haha i have been told by a number of consultants that I am the youngest person they have seen with advanced and aggressive stage 4 metastatic prostate cancer Gleason 9 which is no consolation really, it's such a horrible desease and I'm sorry for your diagnosis. The enzulatimide side effects were scary but I also wanted to try and get back on my feet asap to show my children Im ok, even though I wasn't. I was explained the treatment plan before we started so knew what I was in for, I am on HT for life and enzulatimide untill it stops working which will hopefully be a long way off and hopefully more treatments will be available then, if not it will be chemo. Yes the RT I had before enzulatimide was because of spread to my spine and chest was because of breast swelling caused by the HT. Then after a few months I had RT to my prostate, or the mother ship as my consultant called it haha. The routine is an enema 30mins and 3 cups of water 15 mins before treatment, which once aligned takes minutes. I experienced a few stomach cramps and fatigue. I drank lots of water, ate healthy, excersied but rested when needed. I wish you all the luck in the world. 

Hi Paul 

thanks for your input regarding RT. Any side effects after RT u have ? Like rectal bleeding etc ? Difficulty passing urine or blood in urine . I have had few people say the side effects are worse only a month or two after RT just wondering? Also since both of us are in the younger age group did ur consultants talk about genetic testing ? I am going in for it the main reason to see the risks for my children ( have 2 sons ) but all the more reason in case of recurrence then if offered immunotherapy then it’s effective only if we are gene positive for genes such as BRCA etc . I would clearly recommend you speak to your consultant about that . There are medications in immunotherapy called olaparib etc that work very well if we are gene positive . Thanks 

I did have increased toilet trips passing urine and a little diarrhea but no bleeding, you just have to give the enema time to work and not strain yourself when passing, that's when bleeding can occur. The RT is a cumulative so builds up in your system over the weeks and they say the side effects peak 2 weeks after your last RT treatment. The genetic testing was also a priority for me with my children but I was told there is no testing for it unless you enter a study. After weeks of research I found a study from the royal Marsden which I have entered, it's done via phone call, posted forms then a blood sample and mouth swab which I posted back, I am awaiting my results. If you private message me I will give you the contact details or you can phone me and I'll explain. It's good because my brother and uncle have also entered it to see if they have genetic mutations. It's not just for prostate cancer so will highlight any potential cancer gene mutations

Many thanks 

I have private messaged you 

thanks