Newbie, T4N1 Advanced Prostate Cancer

Hi jnc you husband problems with GP mirrors mine, I was told prostate enlarged and PSA a little high, to be checked again in 6months, the GP I had seen was on maternity leave when I rang back the GP I spoke to refused to see me, said I was normal for a man of my age, and a prescription for more tablets sent to pharmacy, a couple of months later I started to bleeding, spoke to same GP, told I had a water infection, without being seen, more tablets, no improvement so rang again, different GP did water test took bloods, he got result and referred my immediately, I offten wonder if I'd been seen at six months would have been ok.

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It bothers me when GP make life changing mistakes, any very remiss of me, welcome to the site, we are all in the same boat and have experience the same feelings, you are not alone.

All the best Ulls 

Hi, thank you for your reply.  I have just read your story, it does sound similar.  I forgot to mention in my post that over the last couple of years the GPs have also carried out 3 prostate examinations, all said slightly enlarged but nothing to worry about as he’s young and like you prescribed tamsulosin.

it’s great to hear your treatment is working and that the original prognosis given could be miles out, fingers crossed it stays that way and it gives me hope for my husband 

all the best to you 

I'm quite reasonable at the moment, had a few bad days and gone back to bed, but that's unusual, I get breathless a lot and tire easy, I suppose in somways I'm lucky as I was all ready retired, and my kids are adults, no money worrys,.

You ladies have a worse time than us, so how are you both keeping, anything I can assist you with?

my hubby gets tired as well but he has felt tired for a few years, now we know why, he just thought he was getting old.  i must admit I used to tell him he was getting lazy, now I feel a little guilty.  they do say that it can take 6-12 months after chemo treatment to feel ok and that tiredness is the main effect.  did you have many side effects with chemo?

we are also lucky in terms of work and retirement, my husband is 57, we decided to retire early, 4 years ago as we wanted to travel etc, now we are thankful we did as travel will be on hold for a long time, hopefully not forever,

We are coping but it’s early days for us, we are still in disbelief that it’s real and our lives have changed forever.  He is certainly moodier, he doesn’t sleep great and the obvious hot flushes and mood swings, the plus side of those is he says he now understands me lol.  apart from that I think it’s facing your own mortality as we all think we are infallible. For me I just feel I need to be strong as it’s him with the diagnosis and his life is in other peoples hands.   I feel sick at the thought of us not being together in our older age but that can happen in any walk of life.

Never had chemo that's held in reserve if the HT fails, onclogist say 5 to 10 year's with luck and there are other treatments.

So always something to look forward to, after all I'm incurable not terminal 

It’s certainly confusing, I assumed if diagnosed with advanced cancer chemo was given with hormone treatment in the first instance.  it is reassuring to see them looking that far ahead for you.  

 I don’t quite understand their incurable not terminal. 

hope you feel less tired soon

Hi Jnw,

A year ago next month my hubby was diagnosed stage 4 pc with mets in lungs and bones. Exactly like your husband at least three years of gp visits, pain fatigue, water works problems, kidney issues even an appendix out. I even called a 999 coming on for 18months ago due to his pain. He was in hosp for four days and Ct scans, X-rays and still nobody thought or noticed a stage 4 prostate cancer he is older at 70 but we were devastated when a locum gp tested for his PSA which was 44. I know exactly how you feel. Exactly.

the drugs are working and keeping his PSA undetectable. His symptoms of pain and breathlessness are infrequent now but no chemo offered due to his age and no radium. He is on Prostap  and Arbiterone which will extend his life. If PSA rises then he will be offered chemo and then trials. There are loads of treatments still to try so we are hoping for years rather than months. 

it’s devastating and so preventable. Like you I’m trying to stay strong but it’s hard to maintain that over a long time. We are not machines.  I’m starting therapy for anticipatory grief that is consuming me at times. I get so angry too. My lovely hubby is sad at times but staying strong for me I think. We talk and we are making memories. Travelling too!

sendjng you so much love,

Louli xx

Hi Louli.  

it makes me sad and angry that our husbands are facing an incurable disess when it is a slow growing, curable disease and had it not been for GPs not investigating the symptoms they have they could very well be cured. My husband had numerous problems and numerous blood tests, some abnormal were seen but because his PSA was only 3 and borderline, his age and his  slightly enlarged prostate they didn’t feel a further investigation necessary.  
Since my husbands diagnosis I have done a lot of research and we have informed all friends and family and have advised them to be persistent if they feel something is wrong, it could save their lives.  we have subsequently found out that 2 of his friends have prostate cancer, one locally advanced the other advanced, but both around his age, both had signs and symptoms that were not picked up.
My husband is so angry with the GPS that he mentioned it to the oncologist, obviously they know this is happening but it’s a closed house and all we want is not to rock the boat as we want the best possible treatment. 

i can imagine it will be hard to stay strong and positive, we are in it for the long haul, and emotions can run high along wit trying to understand that a lot of their mood swings are treatment related and so not to take to heart.

we do hope we can travel again, it keeps my husband positive,  although we know we can’t go abroad while he is on chemo we are hoping so after.  I have read that it’s difficult, if not impossible, to get insurance for advanced cancer and it seems fairly certain a cruise will not be happening, but we do hope that we will try continue life alongside treatment

let’s hope for years of making memories

xx 

Hi jnc, there a 3 grades, q remission, 2 treatable incurable and terminal, with terminal life expectancy is short, but treatable incurable life expectancy is indeterminate, any time stated is just a guess, all of us are different and react differently to the different treatments, treatments are based on the cancer size aggressiveness and where it is, but also on us the patients, age health in general, the MDT select a treatment path that's in the individuals best interest, if the treatment fails there are others to try.

At the moment you and your husband are in the worst bit, sad confused fearful of the future, and that's quite normal, I all was thought I was a very manly guy, but I cryed for day's after diagnosis, even tried to end it all, my wife stopped me, had lots of counciling, I'm ok with everything now.

That's why I know you ladies have to put up with us,you have the short end of the stick.

Cancer is like a road bump slows you down but doesn't stop you, life is for living not dying.

Forgot to say there is a travel group on here as well,.