Newly Diagnosed. Upset, angry and terrified

Hi John,

Welcome to his community that no one wants to be part of.

I am so sorry for your diagnosis and your fear and terror are so normal reaction. My husband diagnosed 9 months ago and for 3 days we were just in a very dark and frighting place. 

Although my husband PC is not curable but treatable, 9 months on and our life are almost normal. He is reacting brilliantly to the Hormone Therapy and at the moment he is swimming his 80 laps in the pool exactly as he done before the diagnosis. I can reassure you that after all the scans will finish and you decide on a plan with your team, you will feel much better.

This community is brilliant. People are generous, kind and very knowledgeable. People here are going through different path of treatments and they will help you to make decision. 

One more thing you need to know: The most exciting topic on this form is holiday insurance! People are going on holidays enjoying life with the PC and the treatments.

Please ask any question you want and someone here will come back to you.

Lots of love

Dafna

Hi Dafna,

Thank you for kind reply. It’s lovely to hear your husband is responding well to his treatment. Sharing your story really helped. I know it’s normal to feel scared and have feelings of hopelessness but going through it, as you have, is so hard. I’m in a very, very dark place. I’ve got to dig deep. Thank you again, x

Hi there 

My husband 58 has just undergone a Radical Prostectomy for Gleeson 9 Prostate Cancer so more aggressive than yours.

he was diagnosed in April and at the time felt exactly like you. Like you he seemed to have a consultant that was shall  I say “ over pessimistic” and we felt we needed to go home to plan his funeral. 

A couple of weeks later and a trip to The Christie Hospital and a much more positive talk about the treatment and future was had. He was told that he was on a curable pathway even with the Gleeson 9 and that all was not doom and gloom and infact she said things are so positive now with treating Prostate Cancer that even if he wasn’t on a curable pathway there is so much treatment available. 

I’m not as expert as others on here but the very fact you have been offered surgery I believe means you are curable and your Gleeson score is not particularly high so I think you have every reason to be positive. You havnt put your PSA result on so can’t comment on that.

if you read this forum I think you will come away lighter and with a more positive mindset that the future dosnt look so bleak as it does now. 

Keep reading there will be loads of positive stories and advice 

A

I can reassure you you will feel better and there is a light at the end of the tunnel. Just stay with us and away from Dr goggle.

Lot of love

Dafna

Thank you so much for replying Annie and I wish your husband a successful and positive recovery. My PSA was 5.3. No symptoms. Here I am. I am right in that dark place for sure. Feelings of wishing I wasn’t here anymore or being born etc. nasty, nasty place. I’ll fight for sure. Just a very bad time for me and no doubt others here on this forum past and present. Thank you again for taking the time to reply. It has really helped. 

Hello JPMJIG 

A warm welcome to this friendly and sometimes wacky group. Your reactions are perfectly normal and ones that most of us feel when first diagnosed.

T3a means that the cancer has broken out of the capsule but hopefully nowhere else but this will be confirmed by the CT and bone scans. I have attached a couple of links to help you understand the tests and results.

https://prostatecanceruk.org/prostate-information-and-support/prostate-test

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/what-do-my-test-results-mean

https://prostatecanceruk.org/prostate-information-and-support/treatments/choosing-a-treatment/

There are many men with a similar diagnosis who have gone on to have curative pathways and with the current battery of treatments available this is becoming more prevalent.

As a group we try and help inform on what to expect from the different treatments but also try and help you get through these early difficult days. If you need to talk to someone then the Macmillan support line is available. Alternatively you could pop along to a local Maggie's if you have one (they are there for the whole family).

Please ask any questions but for now please banish the negative thoughts and think positively. We are all going to die at some time but you still have many years ahead of you. There is a statistic that 98% of men die with prostate cancer, not of it. There have been several posts recently where the Urologist has painted a gloomy picture but things have changed once the Oncologist has become involved and a treatment plan has been sorted out.

From a personal point of view, my husband was told in 2020 that he possibly had 6 months as he has advanced cancer. Here we are 4 years later and still enjoying life and more to look forward to.

Hi 

Your PSA is low too so another positive. I fully understand how you feel and these next days are the hardest for sure BUT honestly you will feel better. 

If I could transport you out of these dark early days I really would as it’s horrible but it won’t last and once you get underway getting this situation sorted you will feel so much better 

A

Hi. Thank you for replying. It is much appreciated. I am worried it's spread elsewhere but hopefully it hasn't. The thought is might is terrifying. I'm so happy to hear about your husband. Thank you again

Thank you Annie

Hello John, welcome to this group although I’m sure you would rather not have to be here! Being told you have cancer comes as a massive shock and we all react with strong emotions - even us wives! Please rest assured, your emotions will settle in due course and what you are experiencing right now is very very much part of the prostate cancer journey.

my husband was also T3a Gleason 4+3 . He was not offered a CT scan but had an MRI scan and a bone scan and no spread was detected. He was treated ‘with the intention to cure’. Note, this does not guarantee a cure. He chose the radiotherapy and hormone therapy route.

the advice I always give new comers to the forum is to read the excellent publications about diagnosis and treatment on the following link www.prostatecanceruk.org  These will give you a lot of info and will help you to choose the right treatment for yourself and to ask the right questions during consultations etc.

So, yes, you are going through a horrible time but please don’t despair! Prostate cancer is usually slow growing and, even if not curable, is very effectively manageable, giving many men many extra years of quality life. Newer and better therapies are continually being added. Just as an example - in the 1960s my husband’s paternal grandfather died of unspecified ‘prostate problems’ without any treatment. About 30 years later my husbands father was diagnosed with PC and given what is now considered ‘first line  hormone therapy’. Two years ago my husband was diagnosed. Because of the family history he had genetic screening and all our children are now screened every year. He has completed his treatment but we have been told that there are more treatments available if the cancer rears its ugly head again and that he now has the same life expectancy as any man who has not had prostate cancer. 

so - how are we with all this? Well, we had a tremendous and exhausting battle to get through the NHS bureaucracy to get quick treatment. I have nothing good to say about the urology experience. Oncology on the other hand was so efficient, caring etc. We learned we had to take ownership of our pathway by being politely assertive, well informed, chase up appointments and keep a diary and contact details of everyone we spoke to. We also let every department we passed through know that we would take any short notice cancelled appointments. As a couple, it was very tough to start with but as we progressed we became ever closer and more appreciative of each other, what we have built together over the years and just LIFE itself! We try to make the most of each and every day - not necessarily going on expensive trip etc but often just enjoying the ‘ here and now’. Our children and grandchildren have given us lots of love and support - being there at the lowest points for us but getting on with their own lives, as they must, when things are looking good. My husband has just had a birthday and we have been overwhelmed by their attention given to him for this special day. In a nutshell ( pardon the pun) - life is good!

i hope this gives you some pointers and some encouragement as you step out on thus journey. I wish you all the very best and do let us know how you get on?