Recently diagnosed. 44 Help - I’m afraid of Metastatic prostate cancer

Hi Steve,

Welcome to the club that nobody wants to join, but you’ve made a very good decision to do so as you’ll find a wealth of support and knowledge in here.

You’ll still be in shock after being diagnosed, it happens to us all and we think the worst especially if we start using Dr Google! We also tend to blame every ache and pain on PCa or the treatment…it’s natural but all you can do is go with what your medical team are telling you as they are best placed to do this. I’m not saying the waiting is easy, it’s the hardest part of this journey waiting on tests and then test results. You say you have support from your family which is great but there’s lots of other support out there too…this website and the Specialist nurses on here you can phone anytime, your CNS,  support groups such as Maggies. If you’re struggling mentally seek out that support…it really helps. When I started HT I had dreadful anxiety (which IS a known side effect) and my doc put me on Sertraline which has helped keep me on an even keel throughout my journey.

Once you’ve had all the tests and a treatment plan put in place I think you will feel much better.

Your journey is just beginning, mine is nearing an end(hopefully 🤞🤞🤞) and I wish you all the best. There are some incredibly knowledgeable members on here who will offer you information so don’t be afraid to ask…no question is ‘silly’!

And finally be good to yourself and your family, give yourself lots of treats and do things with your wife and girls that make you all happy….it will keep your mind off thinking the worst.

Good luck!

Derek

Edited by member 30 May 2024 at 09:52  | Reason: Not specified

Hope this helps

DaveH

Hi Steve, I feel for you, please try and stay positive. I'm very similar to you Gleidon 7 T3a. I had my prostatectomy 6 weeks ago and awaiting pathology results which are due Monday. I had exactly the same feelings as you on diagnosis and it took a few months to come to terms with it. My saviour was that I had a very large overgrown garden that needed clearing and I spent about 6 weeks chopping trees and bushes to take my mind off things, keeping busy certainly helps. Another thing we did was clear off on holiday before surgery and had the most fantastic week away in the sunshine before life would have a new normal. Eventually I came to the conclusion that I can't have done anything to prevent Pca, I have to accept its here and do my best to get shot of it. Keep busy mate, hug the family and hope all goes well for you.

Hi Steve

i got diagnosed 18 months ago aged 45. A couple of kids similar ages to yours. I absolutely convinced myself it was in my bones. Thigh, hip, spine, foot. I spent time convinced it was in all of these prior to my bone scan results. It was not on any of them. No one is going to stop you worrying, and the medics are right not to rule anything out, but one thing is for sure, you cannot trust your brain in this situation. We are worriers and will think the worst. it is a long way from conclusive, but your PSA would be very low for it to have gone to your bones. I hope you end up on a different journey to mine (mine had actually spread to lymph nodes), but feel free to DM me if you want to speak to someone who has gone through this at a similar age. 

Hi Steve, 

I can understand you being worried and I'm sure you mind is doing a lot of what-ifs. Worrying is a very useful emotion in some situations, but not the one you are in now.

Worry is an emotion which is designed/evolved to make you feel horrible. If you are driving along the motorway and the petrol gauge is low, you will be worried and stop at the next services. If you are walking in the jungle and you can hear a tiger roaring, worry will prompt you to sharpen a pointed stick so you can fight off the tiger. I could go on...

The thing is in all the above examples, worry will cause you to take a productive action to relieve the anxiety. However you are currently in a scary situation, but there is nothing you can do about it, so the emotion of worry is not able to help you at all. Being in a scary situation and being unable to do anything about it is not the same as being in a hopeless situation. You can't do anything, but doctors can do a lot, and they are on your case: quite literally.

So whilst you are worrying, think about what positive action you have already taken to improve the situation: you have had tests, been diagnosed. You have done those and they have improved the situation, because they will lead to a course of treatment. Then think about the next positive action which needs to be taken, and that is to come up with a treatment plan, but that is not your job, that is the doctor's job. So until that job is done, you can do nothing, and that is why you should not worry because the ball is out of your court, at the moment.

Now the above logical approach may help to reduce your worry. If it does not, then you need to change tack. Your biggest health issue is now the anxiety, not the cancer, and you can take positive action to deal with that. You've already done one thing you've joined this forum, you've also got great advice from Decho about support groups, as an absolute minimum if your anxiety has not improved sufficiently over the weekend that you can get a good night's sleep get on to your GP for an emergency same day appointment on Monday morning to address the anxiety. Sertraline and other drugs are available, mental illness should be treated as quickly as a broken leg, there is no point in suffering any longer than necessary. If you feel ok by Monday and don't book a GP appointment, but you go downhill on Tuesday get the GP appointment straight away, there is no point in being on an anxiety rollercoaster.

Edited by member 31 May 2024 at 02:30  | Reason: Not specified

I had my RP which was partially successful and now undergoing salvage RT - none of it has been a tenth as bad as I thought it was going to be - the mind is your worst enemy.

Steve 86

Thanks for the reassurance Steve86. I think the reason I’m struggling is that throughout the process 2 doctors told me it wouldn’t be PC. It was only a third who reviewed my notes suggested a PSA. Even then he said it was unlikely to be PC.

Two other medical professionals have also told me that it’s unlikely to spread to the bones and described it as a tick box exercise. It’s not that I don’t believe them but they have been wrong before. I also have these aches and pains and I don’t know where they are coming from. I know I’m getting older and there will be wear and tear on my body but the pain in my back and leg are concerning. The my mind I’m trying to attribute it to the enlarged prostate and the cancer. 

I really appreciate the responses and people taking the time to communicate. I hope when I’m through the worst I can pay it forward. 

Thanks once more

Hi Steve

Yes, I did have physical pain as well (although nothing extreme, just a dull ache that would come and go), but I do think in retrospect I would probably not have thought twice about it if I did not know I had PC at the time. Basically, I would pick up some ache or pain, it would hang around for a while, and I would fixate on it and be convinced it was evidence that PC had got into my bones. From memory, lower back would have been one of the areas (along with various other areas). That is not to say yours is nothing, or that things should be ignored,  just I know that I have at various points (particularly when waiting for those initial scans) thought to myself that some ache or pain has been PC related, and in retrospect it has almost certainly not been. Loads of people have already said it but it’s true, what you are going through now is one of the worst bits, and it is awful, but hang in there and try take on board some of the advice from wiser folk than me on the mental side. Please feel free to ask me anything you like. I am happy to pass on anything I can on my experience. 

Hi again Steve.

There could be numerous reasons why you're feeling pains in your lower back and thighs. I was diagnosed with arthritis, and get pains in the same places, plus my hips, but they are nothing to do with prostate cancer. 

I was in same place as you, younger and fit, and I'm still in it. I can't give you reassurance as not a medical expert but can say that you have to force distractions on yourself. It's the only way.

I spent overnight in a & e and they couldn't help, even with severe pains. But they did misdiagnosis something else and almost sent me off for emergency surgery.

It's really tough but all you can do is distraction and follow the steps. Don't be hard on yourself, you are only human. 

Hey Steve,

I'm new here too (unfortunately), I'm 48 T3b N0 M0 Gleason 3+4 and PSA of 7.6. I had similar fears to you. Before my bone scan results were back I was convinced it would be positive. I had pains in my left foot and thought it could be nothing else. It felt like I was just waiting for the executioner to strike. I have two boys who are 10 and 13 and all I could think was how I was going to tell them. I do think a lot of it is physiological as I had a gap between seeing an oncologist and a second surgeon. I tried to keep my mind off it and kept busy, also thinking there is nothing I can do about it for now. I felt surprisingly good in that time!

I'm now at the point of choosing treatment, although rather unhelpfully I've been advise that surgery is my best route, then by another surgeon who hadn't realised I'd seen anyone else that radiotherapy/hormone therapy is the best path.

John

Hi John,

Thanks for replying. Much appreciated.

I have had my bone scan and I’ve been given the all clear. I do have to have a PET scan (more anxiety). However, I am feeling a bit more positive about it now.

I’m still on a curative pathway but I have not been given the option of surgery. I have a suspicious node. They have told me it will be hormone therapy followed by radiation if the PET scan is clear. They have also said hormones potentially for 3 years. It seems to me that I don’t have a choice and the treatment has been decided.

I’m back at work now but I do think about it every day. 

I wish you all the best on whatever treatment path you follow. Thanks once more for sharing and please keep in touch.

Steve