Treatment Decisions any help please!

Hello again Brian.

I am so glad that you have reached out to your friends in this group. We understand what you are going through and are here to try and help. The tears are normal. Last night we were with our adopted family to see the New Year in and every so often hubby just burst into tears. Tears of joy that we had made it through another year, but tinged with the fear that it may have been our last one together. The family just gave him another tissue and a big hug and carried on as normal. Once you explain it is partly the drugs then people are very supportive, although I must admit a little difficult when it happens in the middle of the supermarket.

The insomnia I can understand as I sit here at silly o'clock replying. Counting sheep doesn't work. The problem is that you then get into a routine of waking up in the middle of the night or worse still not being able to get to sleep in the first place because so much is going round in your head. When bad I find that taking half a sleeping tablet for three nights breaks the cycle. Also having a cup of camomile tea might help before bedtime. Avoid alcohol and anything with caffeine in as they act as stimulants.

Unfortunately the decision as to whether you have chemotherapy initially is one that only you and your family can make but I can understand your feelings. My husband has an aggressive advanced form of PCa diagnosed in July 2020, so yes we are still here over 3 years later. He was scared stiff of having chemotherapy, partly because he had seen the effects it had on his mother 40 years ago. Things have improved considerably since then as there are a lot more supportive drugs available to reduce any side effects. His experience with docetaxel was not as bad as he had feared and we have been told that he will probably need further rounds in the future. No it was not easy for him but his attitude now is that if that is what it takes to keep the monster down then he will go for it. My husband completed his chemotherapy in October and now says he is feeling the best he has felt since initial diagnosis.  How long it will extend his life we do not know and everyone's cancer reacts to treatment in different ways. 

The balancing act between treatment and quality of life is a difficult one. Our attitude is that as long as we can still do the things that we want to do like going out for a coffee or meal, the garden, an occasional couple of days away, then he will continue with treatment. The side effects from the hormone therapy are mainly under control. The hot flushes were bad until he started having 1-2 cups of sage tea a day. For the man boobs he asked for a prescription for a bra. Diet changes have become a way of life which he now prefers, as we don't want him to slide towards type 2 diabetes, and he has had to buy a bigger pair of trousers to accommodate the middle spread. His biggest challenge is the fatigue so he now has an afternoon nap, but not too long as it can disrupt night time sleep. The second generation antiandrogens work on a part of the brain and gave my husband headaches initially but is no longer a problem. ED and loss of libido we accept, it's a small price to pay, but have lots more cuddles. The wobbly willy means that he now has to sit down when he pees. 

For us the first 6 months were the worst until we got our heads round that his diagnosis was not an immediate death sentence. His fear was for me, mine was for him as I didn't want him to suffer but I also want him with me for as long as possible. We talked it through and have got on with living.

What I am trying to say is that we have adjusted to a new, but different way of life which is still good.

Please come back with any questions and well done for expressing your fears and feelings as it helps everyone to know that they are not alone with them.

Hello Brian k  A warm welcome back to the Community.

I can see there's so much going on in your life and you have only had the diagnosis for a maximum of 8 weeks and everything is a "whirl" at the moment. Your post asks for help in making a decision as to which direction you should take as to treating advanced Prostate Cancer - to me and this is a personal choice - the most aggressive attack possible - which to me is Chemotherapy.

You have started on Hormone Therapy - this will reduce your testosterone - the "food" for the cancer - it will stop it growing and any further spread next - hit it with all the drugs you can fight it with as fast as possible - this with a positive attitude, may at first drop your quality of life down - but it should enable that life to be extended and with a decent expectation for a longer life.

I have been on Hormone Therapy for 2 years and yes there are side effects - I have managed them all very well - my family know of my condition and are all 100% behind me - I had one of those days yesterday where I just broke into tears - they just ignore me after passing me the tissue box!! As for the rest - so I have "moobs" , Sage tablets for hot sweats. I walk as much as I can to combat fatigue, and as for ED - my wife and I are closer than ever and you know - I don't miss sex (I would rather have a meat pie!!).

I have just re-read the post above from my friend Alwayshope and to me there are two things I really agree with:

Alwayshope said:

For us the first 6 months were the worst until we got our heads round that his diagnosis was not an immediate death sentence

and

Alwayshope said:

What I am trying to say is that we have adjusted to a new, but different way of life which is still good.

Honest opinion - take those two quotes - print them off - stick them where you can see them and together, YOU and the Community can fight this - you will get there and you will have a decent quality of life - together WE can make this happen for you.

With my "Community Champions" hat on I would suggest for some re-assurance you give the team on the helpline a call on 0808 808 00 00 (8am to 8pm although I am not sure about the hours today) - but they can give you that little extra help you need now.

Please come back to me if I can do anything else for you.

Best wishes - Brian.

Hi Brian k

We have a very similar diagnosis to you ( we I mean the royal we - my husband and me) . I agree with everything Alwayshope said in her brilliant post. We have not offered a choice. The oncologist decided that for the time being is the implant injection and 2nd generation HT. My husband already had 1st injection and meeting with oncology team for supply and guidance re 2nd generation HT. 

Like you, we are with grown up children and adorable grandchildren and my husband now is in the kitchen cooking lunch for all of us ( he is the cook of the family) . We made a decision to choose life and to enjoy it. As they all say in this community, keep being active, look after yourself. Your are lucky to have such a supportive family. We are positive and optimistic. I read yesterday Shar post which is brilliant. They booked lots of holidays for 2024 and if I remember correctly her husband just finished chemo a couple of months ago. 

Please stay with this community, it is inspiring and fight this PC ba....d head on.

Lots of love

Dafna from Brighton

Hello Brian k and a very warm welcome to you. I can't really add much more to excellent advice already given by Brian and alwayshope but you may want to read our journey by clicking on my name. Sending best wishes to you 

Ho Brian you always make me lough - meat pie

Lots of love for the new year

Dafna

Hello Brian

oh, my heart goes out to you! This time last year I was where you are today. The shock and the fear for my husband were so overwhelming and I, too, became sleep deprived. Things always seem worse at stupid o clock when everyone is sleeping! I don’t know whether it’s coincidence or not but what I found helped me get back to sleep was to have a helping of breakfast cereal ( milk is supposed to help sleep , I think?) and switch radio 4 on to listen to. Radio 4 in the middle of the night can be incredibly boring but listening to it stopped my brain spinning round and round and the mostly boring content helped with the sleep problem!

my husband’s diagnosis has profoundly changed our lives and our outlook on life - and not just for the worst!  I think it has made us both realise that none of us, not one single person on this earth, will go on forever!  We need to grab the joys in our lives and appreciate them now in their full. For a certain lady posting here - this joy looks like being wonderful holiday plans! For another it is the comfort of ‘getting on with living’ and adapting. For me it is all about family - being with them, helping them when we can and taking pride in the achievements of our children and grandchildren. We all take pleasures and comfort from different things! My husband, for instance, has taken a slightly different comfort by suddenly becoming brilliant at wood turning! He’s now got a man cave and spends hours in there with his woodwork and , now, he’s being commissioned for his woodwork! In the meantime my house is full of wooden bowls!! :)

so, a diagnosis of prostate cancer shakes us to the core but it brings about changes in our lives which are not always bad and can be positive in that we appreciate even the little things in life so much more and opens up new horizons for us. We learn to live with the diagnosis and to live far more for each day. It can be looked upon as a wake up call that shakes us out of the misplaced complacency that we all have that we will go on for ever!

I hope this helps you to see that you are not alone in these despairing moments and that we all go through them when we get the diagnosis. (At the time I wrote in my diary, ‘the dollops of bad news just keep on coming’ ) But, the emotions do settle in time and we learn to live with a new normal which can be incredibly fulfilling. 

With my best wishes and hugs and love to you and your family x

WW what an inspiring post. Thank you and have a healthy and peaceful 2024

Lots of love

Dafna from Brighton

thank you whar a lovely informed reply

thank you this has really helped me

Been to sheff wednesday match with my son and 2 of my grandkids .... I have no interest in football at all but sheffield won hull 3-1 and i was on sky tv lol I really enjoyed it and had a propper belly laugh it was luvely to see my offspring enjjoying there life, this has made me realise how much love i have got round me more than ever before and a wonderfull daughter and wife and all my family,

Trying to stop worrying about me but still fear the future today been shopping and even enjoyed that ! trying to get out more for light exercise and take my mind off the constant worry. the weather does not help but im ok to drive at the moment (or sail with the flooded roads.

Thankyou all for your genuine support not from people guessing and telling me all the things that they think make me feel better but from the genuine people that know how this fooks up your emotions also i had a meat pie for my tea 

Cant thank you all enough for your fantastic support