Just Found Out, Head Spinning

MUFC62

Sorry you have joined our Club.  None of us want to be in it but in our position you have certainly come to the right place.

My diagnosis sounds similar to you.  My cancer had spread to lymphs.  That was 7 years ago and it hasn’t got me yet!

Once you get your biopsy out of the way post again and you will get lots of advice.  My first thought is to try and include your wife.  It’s a hard journey on your own!  Whatever you choose the community will be with you.

Good luck with your biopsy.

David

Hello MUFC62 

A warm welcome to the online Community and to the Prostate Cancer forum. I know you don't want to be here but you are in the best place for help, advice and general banter - we aren't a bad bunch !

First off that's good news that it's only spread to your lymph nodes - that's a great start - but with a PSA of 398 you could do with starting on Hormone Therapy ASAP. This will stop the cancer from growing and going any further before a treatment plan is put together - it's worth contacting your consultant to see if they can sort this.

I was in the same situation as you 23 months ago PSA lower of 182 but spread to my lymph nodes. You can follow my entire 23 month journey bu clicking on the icon of the beach - it's going well now - but I had a few issues.

I know it's hard, but you are embarking on a journey and it's going to be a joint one with your wife - you will need her onside (I know ladies don't know the offside rule!) but you do need her "onside" with you as the ongoing treatment will affect her.

Good luck with the biopsy - anything you need to know - however trivial just ask - you will get an honest answer.

Best wishes - Brian.

Hi MUFC62,

This is all very frightening for you but you have come to the right place. They guys here (both male and female) are always ready and willing to give you advice and we are a friendly bunch. I am a wife who's husband has metastasised pc and his initial psa on diagnosis was 1200. He had no particular symptoms but did finally tell me he was struggling to wee and the flow was not good. On  hearing this, I immediately got him an appointment with the doc and within two weeks he was booked in for an MRI. However, when we saw the consultant prior to the scan, after a dre (digital etc, you get the picture), she pronounced rather unemotionally, that he had advanced prostate cancer. After three different scans done a couple or so weeks later, they found it had spread to other parts of the body, namely the bones.

That was nearly 2 and a half years ago and he is still with us. He can only have hormone treatment as has other health issues, and has recently been put on an extra tablet as his psa was increasing.

You will glean lots of advice from some of the wonderful guys on this site, but my advice as a wife, would be to definitely speak to yours. You should not shut her out from this problem and I am sure she will be a great support to you. I also always advise that, if possible, she goes with you to appointments. Very often there is a lot to take in and having four ears is better than two. My husband (78) has real trouble understanding foreign accents so I end up translating for him and also explaining things he may not have grasped. I have joked in the past that it would be better if he just sat in the corner playing with the toys, whilst I chatted to the consultant!! 

Joking aside, things are never as bad as they seem when you get the initial diagnosis. Treatments have improved so much and are still are. No longer is prostate cancer an automatic death sentence. Read some of the other profiles and you will see some amazing fighters on here and who will give you so much support and encouragement.

Best regards

Gina

A warm welcome MUFC62. Firstly you are among friends who know exactly where you are coming from and will try and help you through the nightmare you have found yourself in. As you have spread to the lymph nodes then the treatment is going to be a bit more aggressive and you will struggle to keep your treatment to yourself. I think that most people will say that it is a couple's diagnosis and it a lot for you to deal with on your own. It is natural that you do not want to upset your wife but from this wife's point of view I would have been upset if I knew that my husband was suffering and I had been denied the opportunity to help him. Yes we both had tears and fears but I can honestly say that fighting this thing together has brought us closer together.

You will find the people on this forum will give you honest advice based on their own experiences and will try and answer your questions no matter how small. You are at the start of a very steep learning curve and would urge you to find out as much as you can from places like PKUK and Macmillans, but not to randomly Google for information once you have got the results from your biopsy.

The first thing you need to do is get as fit as possible as all treatment options can cause fatigue which can be best combatted by exercise. Also with the PSA of 398 you need to lower it with hormone therapy as soon as possible. The cancer will be stopped in it's tracks by this and give you time to sort out the next step in treatment.

Please don't try and deal with this on your own and come back with any questions.

Hi MUFC62

A lot of us ( men and their partners) experience getting the diagnosis with a whole gamut of emotions - shock, fear, anxiety, etc. this does subside as you go along but those first days, weeks and, sometimes, months are tough going until you find out what the treatment plan is and how and when it will start. You are not alone in this - we have all been there!

I was in a dreadful state when my husband was diagnosed. He held it all together but doing that meant he wouldn’t discuss it with me at all. Now, I know he was trying to protect me , but then I felt so totally shut out and so very lonely. He was like our tortoise - he pulled everything into his ‘shell’ and would not talk to anybody - not even the doctors ' at his appointments!!

now, thankfully, we have radiotherapy behind us and he had his penultimate hormone injection yesterday. Yes, he gets the side effects and I hate seeing his struggles. But… on his ‘down days’ he talks to me and tells me how he is feeling. He has spoken openly about it with people he knows and, actually, has been surprised by how many men have had the same diagnosis! Then they start comparing notes and he comes back and tells me and I know that he has taken comfort from being not the only one on this prostate cancer journey.

Only you know how you feel about talking to people and how your wife is coping. I know that I just felt like my world was falling apart and this was made far worse at the time because my soul mate would

 not talk to me about this massive upheaval in our lives together.

i hope you soon get to know what treatment etc is being planned for you. I wish you all the very best for your journey and I hope you can let us know how things are going.

Hi Mufc62

I know how you feel. My husband just diagnosed 10 days ago and I felt shaking and physically not able to coop. The people here just picked me up and I am feeling much stronger now. There is a long journey and with treatments today so much advanced, there is lots of years to live. BUT...I know my husband would not be able to do it without me so maybe you should reconsider because you will need her love and support. Personally, that is what I think. My husband is going to have the bones scan on Tuesday a week but we know it is in the pelvic bones and the nodes. I also find the specialist nurses on the prostate cancer charity so knowledgeable. It is good to speak to people and keep your inner circle in the know.

All the best wishes

Dafna

Hi Mate keep in touch as i am one step behind you and was diagnosed with a psa test of 1800 ! i am no expert and also new here but I have not had my scans yet and i am really frightened of finding out the results also so I know what you are going through, I also am trying to keep my wife from being upset but I have told her and my grown up children the truth as far as i can for now but it hurts.

Brian.K

Hi Brian. K

We know what you are going through. My husband just diagnosed 12 days ago and I was so frighten. I was physically  shaken and cold. He was calm on the face of it. What we found out in the last 12 days that it is not a death sentence and there are drugs for every stage and the quality of life is good. People here thought me that life goes into routine and you keep enjoying what you are doing as a family. What i learn here that you can ask any questions and people will give you an honest answer. Be strong and don't let it win over you. The specialist nurses on the prostate cancer team are amazing help. Not only compassionate which is important, but their knowledge is so helpful.

Best wishes from Brighton

Dafna

Good morning MUFC62.

I'm always intrigued by the names that people give themselves on the forum. Some are obvious, others intriguing like Slartiblartfast (good morning to you and hope you're doing OK). If I am right then can I guess that you are a Man United fan? My husband is an avid Man United fan and has been for over 60 years so sends his greetings. Now I don't want to start football wars but I think things need to be balanced up with the Oldham lot who have had the limelight on the forum in this respect. Look forward to hearing whether I have guessed right.

HA! Off topic - but I would have you know that the mighty Oldham Athletic were founder members of the Premier League in 1992.

Just because we are now mid table in the National League doesn't mean we won't be back!!

And my best wishes go to Alwayshope and MUFC62 and to all who follow football.

I hope you are all well this fine morning - best wishes - Brian.