New, scared and terribly sad

Hi One and welcome

I must say I don't find your Oncologist's remarks about the 5 years helpful at all, no one knows really.

I have read of people on HT still going 10 years later.

I have  also read about Abiraterone and believe it is a good treatment.

Don't forget there are often new treatments coming on stream so could be worth looking at that together with clinical trials.

PARP inhibitors and immunotherapy spring to mind.

I hope things work out ok and keep us posted, I'm sure that others will post as well

Best wishes

Steve 

Hello OBAAT

I’m so sorry to rend of your distress. The shock of the diagnosis, the absolute fear and all the ‘what ifs’ are so overwhelming when the diagnosis is first given. If you are like most of us wives here, you will find that these horrendously scary and painful emotions do settle in time as we slowly get used to the idea that our world has changed.

that said, it’s important to note that the treatment of prostate cancer has improved drastically over the years and ongoing research is resulting in newer and better treatments all the time. As Steve has said, there are people posting here who have been trundling on for more than 5 years - I’m sure they will join in and tell you about their own experiences in due course

I know, too, that you will get lots of support here! I don’t think I could have got through the last year without some of the fantastic support I have received here and I hope you will feel that same warmth and support as I did.

I wish you and your husband all the very best and hope to hear how you are getting on

Sending you a big hug!

Hello One - and so sorry to find you here. Your OH sounds similar to mine. G9 ( upgraded from 7)  and suspicious lesion T5 and 7th rib. No one has mentioned time and no one can really know for sure. 
My OH had 6 rounds docataxel chemo and just finished 20 sessions radiotherapy. Along with HT.  They’ve said not curative that’s all. No lymph nodes involved and still confined to prostate vascular fat as we know. 

You May want to take a look at the research into triplet therapy which is HT , chemo and an additional drug. The research from UCL is interesting around oligometastatic spread-( less than 3 or4 lesions) .  You can also speak to the Prostate Cancer UK nurse specialists who are very kind and have a good understanding of what’s what.

what I’ve learned on this horrible journey is that PC seems to be different for every man. I  like you can hope that things will be developed on our journey but get lots of info, lots of knowledge and ask to speak to oncology. Urologist are great when cutting stuff out but when they can’t, the oncology folks use their own magic to try to help our men live as long as possible. 

it’s a devastating diagnosis and a fight - it’s unfair when you get to an age of thinking of freedom from work and retirement then this comes along. Get all your info lovely- there are amazing people in this group too and wishing you both well. X

Hello one breath at a time  A warm welcome to the club you didn't want to join!

I am so sorry to have you here but it's the right place for help, advice and general chat - the people in this group are a great bunch many who have "been there - done that" and are still here many year on.

 Grundo is spot on with his comment about the time scale - we are all different and there are Community members with a Gleason 9 diagnosis who have been around for many more years after diagnosis than 5!! (I am a Gleason 9!!.)

My initial reactions to you are:

* You have started this journey as a couple - "it's a couples cancer" and it's great you are on this journey with your husband.

* For most of us the only initial signs of the cancer once we are on HT (Hormone Therapy) is fatigue. It's vital to keep fit - fatigue will creep up on you.

* You are fine at work - I and many others lead a normal life - it's just filled by many appointments and as Radiotherapy time comes 4 weeks of daily appointments.

* One statistic for you - 98% of men with Prostate Cancer die with it NOT of it!!

If it helps - you can read my personal journey to date by clicking on the icon of the beach next to my name.

Feel free to ask any questions - however trivial they may be - you will always get an answer. 

My best wishes to you both.

Brian,

Hello obaat.

Another wife here to welcome you to the group. Just to reassure you that your feelings are normal, especially during the first six months when everything is up in the air during initial diagnosis, doctors appointments and then treatment. You will feel that the world revolves around prostate cancer but things do settle down into a new normal. We all feel as if we are on a rollercoaster that we cannot get off but things do get better. I will never forget our oncologist words when he said he could do 50% but the other 50% was up to us in terms of positive attitude and lifestyle changes. Once you have seen the oncologist you will have a better idea of what you are facing so come back to us and we can help put some meat on the bones to help you get through the next step on your journey. There is plenty of help around for both you and your husband as it is just as important to look after yourself. All the other people who have chipped in so far have offered excellent advice based on their own experiences and am sure will agree that you can both still have a good quality of life. It would be helpful to put your husband's full diagnosis of Gleason, grade group, TNM if you are willing as this may prompt those with similar stats. to share their experiences and hopefully reassure you. Advances in treatment have been coming through at a rapid rate so keep planning some good quality time together.

One thing we have forgotten to say is that the hormone therapy your husband has already started has put a brake on growth of the cancer. You should find that the PSA goes down rapidly which we all find reassuring and for most it is the indication that everything is under control once initial treatment has been completed.

Hello and welcome. My husband was symptom free when he was diagnosed in April 23 with a PSA of 59.9. After a biopsy and scans we were told Gleason 9 with spread to spine and ribs. At this point my world fell apart, I thought I would spend the rest of my life crying and feeling sad. I asked the oncologist how long and he refused to answer, I understand that he can't put a time on it but said we cantreat this for many years. I didn't or couldn't accept this at first and was making myself ill which wasn't helpful to my husband. So with all the help and support from people on here I gave my self a good talking to. Since diagnosis husband is now on triple therapy, he has just completed chemo no 5 out of 6 and doing so well with no symptoms. He also takes daralutamide tablets every day and has 3 monthly hormone injection called decapeptyl. Yes life has changed over the last few months, mainly due to the chemo and having to be careful but as soon as that ends we are going out all guns blazing to live our lives again. Nothing or no one ever gets the better of me and it is the same with cancer. We are in charge of the cancer it is not in charge of us.  Husband's PSA now down to 0.17.Sorry for waffling on but just want to say you are not alone in how you are feeling and we are all here for you. Sorry about the hands I don't know what I did and I can't get rid of them . 

I'm in a similar boat

My PSA test was done as a routine blood test for another issue and it came back as 383

I saw the urologist and then had MRI/Bone scan etc

When I saw the urologist again I got the impression that as he knew it was cancer he wasn't really interested and shipped me off to the oncology department.
He promised to send me information about it but I never received anything and I'm not expecting to now.

When I saw the oncology consultant I again felt like he was going through the motions when explaining my options and he had already decided what they were going to do with me.
I asked a question and was shot down with a 'I'm getting to that' answer

I read up everything I could about prostate cancer. I realise that the the survival rate over 5 years is 29% and I am going to do whatever I can to be in that 29%. I'm classed as T4N1Mx as there are multiple areas on the bone scan that showed up.

I feel that to the consultants you are just a number. They see hundreds of patients and I feel they become a bit blasé about it, forgetting that to each patient it is a major thing

I am on HT injections every 3 months for the rest of my life and just about to start my 4^th Docetaxel infusion on Thursday. The side effects of the 1^st two weren't too bad apart from acute stabbing pain in my ribs for 8 days after the first one. Side effects of the 3^rd on left me feeling crap for 6 days

You have to grab this by the horns and fight it.
The nurses I have dealt with have been great, the consultants, not so much

At the end of the day your mental attitude and determination play a big part of it as well as the drug treatment.

I still get up every day and walk the dog and work, it's a good discipline and even when I had to stop for a rest after 1 mile I kept going.

This crappy disease is not going to beat me, I'm a fighter and will continue to be so

My PSA level before the last chemo had dropped from 383 to 1.19 so something is definitely working

Keep Positive and you will beat it ;-)

Thanks for your reply...no I wasn't overwhelmed by his statement either. Appreciate your thoughts. 

Thank you so much for your detailed response and I will definitely be reading your journey. Much appreciated.