Terrible journey so for.

Could I please ask how he coped with radiotherapy, my Husband is due for a 6 day blast in December.

I was wrongly diagnosed but diagnosed in march 24 treatment started June 24 gleason nine stage four ,everyone is different area to area 

Hi ,

my OH coped very well once he knew what they were doing. It’s all about what to expect / the unknown .

He first went and had the gold seeds implanted into his prostrate . Which he described as similar to the biopsies 

He then had the planning RT session . He had to self use an enema then drink 2 glasses of water to part fill his bladder. Sit for at least 20 mins  . They then took him through and they set him up by putting three tiny tattoos on his lower body where they use during the RT to guide.   He found this ok and was told it would take a few weeks before he started .

He started the RT 6th December and he had to go through the process of enema / drinking water/sit . He was pretty uptight walking away down the tunnel ( he used the phrase ) He was away for around 30 mins . Apparently it takes them time to set up to ensure they zap the right bit.  He came back but headed to the toilet ad he said he was bursting for a pee . He had no side effects and said it was more the thought rather than the treatment .

He decided after the first zap that he would not eat dinner the night before and just have something light as he wanted to make sure his bowel was empty. This worked well for him.  We did not change his diet at all other than the night before. 

He was fine but pretty fatigued which was ongoing for about a month afterwards  A few times he felt he couldn’t pee so he made sure he had plenty water which did the trick. . He had had no other side effects.  

sorry I thought I had sent but must have deleted . Hope this helps .

Best wishes & hugs 

Liz & OH x x

Thanks for that Liz, useful information, it gives me an insight as to what to expect.

Hello juda8240cd38cb 

My husbands story is very similar, I’ve listed his treatment on my bio. My personal opinion is that there’s an area that is bang in the middle of curable and treatable and it’s hard to define what side you are on , probably until the “micro mets” become visible on scans. It was explained to us roughly like this. “We suspect metastatic cancer is there because your PSA is high (115) and your biopsy results point to it and it’s broken out of the capsule and into the surrounding area, but we cannot see the spread on the scans, as yet.” The main reason is that when BW was first being diagnosed - we insisted that he start HT right away, because of the wait times, we felt panicked and knew he was on the cusp of cure, his GP agreed. The flip side to this is that it immediately shrunk back and activity (micro) outside the prostate area and possibly masked further spread. So this leads to your question of delay of HT. I now see things differently from the heightened fear and panic of when we were first aware of his PC. Now I feel there is more of a window of delaying HT, not a big window, but I’m now not sure a couple of months can make that much difference and you are more likely to pick up things on the scans. For the last three years of HT we are still not quite sure exactly what we are dealing with and are waiting for it to show itself - because it’s “statistically there”

So hard to look at any positives in this situation, but there is an advantage to knowing where you are. The team looking after your husband have pinpointed micro-metastatic spread in the lymph nodes, it’s not been shrunk back and hidden with ht . Now they have seen it, it can be shrunk back and suppressed to stop it going any further and then your husband will have radiotherapy that will target this area with the intent of killing off all the cancer cells. 

Prognosis - my husband and I have become quite used to living with cancer over the past few years, now and again we flip out, but it just becomes the norm. It’s changed our relationship a lot, but it’s also allowed us to hone down what is important to us and concentrate on that. I try to look at it like this ( when I’m not flipping out)  I know for a fact that in the past we have just drifted through life, leaving things till later “ do that when retired, save money for old age “ that sort of thing - so boring really . Now we have a heightened awareness of time and we are packing so much in- just doing life and it’s actually ok . 2-10 years - they don’t really know, it just a rough idea. Last time we went to see the consultant he said, “you are doing so well on your medication, I would say now your prognosis is in the middle range. “ tells you absolutely nothing really . When questioned he said “ mmmm I’m, thinking you could definitely get to the 10 year mark,” seriously, it’s sort of irrelevant really - it’s what you decide to do with that time. We are all going to die at some point and yes we would all like have as many years as possible. But what you do with it counts, we’ve had the heads up here, We are not going to sit watching tv, worrying about stupid things, we can pack 25 years into 10 and just leave out the waste of time   bits. 
Focus now on getting the RT done, make health changes if you need to- eat better, do more physical exercise as this is known to make treatment easier and promote a better sense of well being. Do things that make you both happy, book an amazing holiday for a few months after RT. When he’s recovered. 
It gets easier to navigate “treatable” PC As you go on, you will find that and remember what may not be curable today, does not mean that it’s not curable within the next few years, There’s constant change with treatments and drugs. What was not possible 10 years ago is possible now. We live in fast moving times. 
Hope that helps ? 
best wishes 

Lx 

Good Morning Lorraine (BW) 

What an absolutely brilliant post - what's more it describes my journey perfectly. PSA and Consultants meeting next month. (yes your "lab rat" will keep you posted).

Thank you for your continued support around the Community - I trust you and Mr BW are keeping well.

Kind Regards - Brian.

HiMillibob !

Ah yes ! Hope all is good with your blood test  coming up, would be great just to tick along nicely. BW’s is October, this is the longest he’s gone between bloods, but he’s still taking Zoladex - so should hold steady. 
Let us know.xxx 

 Beautifully said L .  

hugs to you both 

Liz & OH xx

Thank you Lorraine, yes it does help, I understand more why his treatment was not started at the beginning, it now makes sense.  

Hi juda8240cd38cb 

I am sorry to hear about your husband’s prognosis. It is a very difficult thing to deal with alone, even when you feel you are alone- you are not - there are very caring and highly knowledgeable people in this forum who are fantastic and unselfish with their time.

I was diagnosed at a similar age a few years ago. It has been very hard for my wife and 3 kids to deal with. Fortunately I could process it quickly and having a fight mentality allowed me to keep it together. My wife on the other hand lost a lot of weight and needed to take antidepressants for about 6 months to deal with my condition due to severe anxiety. During that period I had to be there for her as she was falling to pieces behind the scenes. She tried to hide it, but was not good at it. Today we are a strong team and try and enjoy every day. 

I have no idea how you feel about your Oncologist and if he is the person you entrust your husband’s live in. If there is any doubts, Consider a 2nd opinion. I am Stage 4B and my Oncologist believes he can still cure me. His positivity has been very important to us, I need someone who does not give up and prepared to try and beat the stats. I do not take any HT or any other medication as quality of life is the most important requirement for me, these were my choices. Hopefully not to worst decision I have made for myself. Please remember we are all different and my situation is one of Oligometastatic spread to the spine. I by no means suggest that your husband should stop HT or any other medication that is prescribed for him. Have look at my profile.

All of the best and take care of your own mental state first.

Kind Regards 

Munster