Hello
i originally posted as my husband had a PSA of 225 and on DRE was referred urgently to oncology. He is 57 years old. He was quickly started on two weeks of Bicalutamide then a Prostap injection and a further week of Bicalutamide. Only symptoms were getting up several times through the night to pee. He had a bone scan, which was normal and then a CT scan and last week got a biopsy, they said biopsy results will take three weeks then he will see the Oncologist for results. I spoke to the clinical nurse specialist today to see the time frame for results and was told this would be roughly three weeks but she said the CT scan was back. I asked about it and she said it showed cancer in the left lobe of the prostate with spread to lymph nodes in pelvis, i think she said two lymph nodes, but although I was expecting the possibility I was still devastated. I asked if he could have the prostate removed but she said unlikely as spread to lymph nodes. She said most likely he will get radiotherapy plus started on Abiraterone. I’m a bit confused as I was thinking they wouldn’t decide on treatment until biopsy results are back. I don’t even know whether to tell him the CT results when he comes home from work as he just hates talking about it. When we got the booklet through about the biopsy he refused to read it and I had to read it to see if any prep was needed and it’s just as well as he had to take a urine sample with him. He said he didn’t want to know about the procedure as it would keep going through his mind and he just wanted to turn up on the day and deal with it then. He doesn’t want to speculate on possible treatments until all results are in and what the Oncologist recommends. Again, as he doesn’t want to be constantly thinking of it until he has to. I’m left in the position of whether to tell him what they said about the CT scan or leaving it until he sees the Oncologist. It’s all very distressing.
Linda
Hi Linda
I am so sorry to hear about the situation you are in. Let's face it we men are all wimps and sometimes rely on our partners for everything.
The issue is it's Prostate Cancer and even though he's got it - it affects the entire family and will continue to do so for a few years!
I am in the same boat as your husband in that the PC has spread to my lymph nodes so.
* As it's left the gland surgery is not an option.
* It's likely the diagnosis will be HT/RT.
It will be when the biopsy results come back and the MDT meeting is arranged when the full treatment plan is formulated.
Whilst I know from the male side of the family a cancer diagnosis is hard to accept - the first thing we say is -"why me" and then try and ignore it and it will go away - this won't.
If it would help - can I suggest two things;
* Read through my journey down this Route - it's taken me 18 months but there is a happy ending - click on the icon of the beach to red it.
* I have offered this before and it's worked for someone else - I don't know your husband and he doesn't know me but I am happy to answer any questions he may have on a one to one basis as I have "been there, got the t shirt".
Personally he needs to know and he needs to accept he's at the start of a journey - and he's got to accept it's not going away.
This may sound a little brutal and you may need to find the right time and place to break it to him - but tell him you must.
Sorry for being harsh and long winded but I hope this helps.
Kind regards
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Linda
It's no problem - I have been on this journey for 18 months and I set off as you said "like a rabbit caught in the headlights". I came on here seeking help and I got it - not only did I get help - I also got friendship - I said once I am sorted I intend to put back what I have had out and more.
I know PC is a serious illness but I do try and make light of it with humour - some no doubt too dark to put on here but as a man the one thing you are going to lose is your dignity and you know - you have to accept it.
As for the Hormone Injections - 3 years is the normal - with the side effects - and we all get different ones, not all of them, 3 years is enough. The hormone injections reduce the testosterone on which the cancer thrives and then the radiotherapy kills the cancer cells off. That's it in a nutshell.
If you click onto the "Prostate Cancer UK" webby page they have loads of fact sheets such as "living with hormone treatment" and a basic prostate cancer guide. All free and very well written and full of information.
Just an aside, hormone treatment does have an effect on your bone structure and many people get prescribed calcium and vitamin D tablets - it's worth asking your GP for them in due course.
It's a journey you and your husband will be on for a while so perhaps don't rush him, feed him what he need to know and be ready to confirm all the details when he's ready.
Ask away, anything you want - I was in your shoes in January 2022 and I know what it's like!!
Kind Regards
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Morning Linda
I don't know where you are in the UK, but in England we have the NHS app. I went to my GP surgery and requested full access to my medical records on the app. They didn't want to give this to me but I have it now and it's been a godsend on this journey.
I am under the local GP practice and where I live for various treatments I am under either Northern Care Alliance, Manchester University Trust and Christies and they don't talk to one another. On will ask for say a set of blood the other has done two weeks ago - but I have the results on the app - so don't have to go again.
The other advantage is that I see my test results as soon as they are on the system instead of waiting or ringing up for the results. Copy letters to the GP from Oncology and Urology are also there to view.
Hope this helps.
Kind Regards
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Ha - Sorry Linda - I just knew when I was typing that you would be outside England.
Off topic, someone brought me some lovely Lorne sausage over the weekend from Lockerbie - Scotland has much to offer!!
.
Kind Regards
Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
