Stage 4 prostate cancer, Gleason 10

Hi Anna 42

i was diagnosed eight and a half years ago, still here being positive and fighting the best I can.

My Onocologist is the best in Manchester, he also gives advice to other cancer hospitals. 
Sorry to say there’s no cure, but that does not mean your OH hasn’t got plenty of time, if you read my profile you will see all the treatments I’ve gone through and I’m nearly seventy three.

Staying positive is a must, there will be good and bad times, it’s just a case of being there for each other. My wife is my carer and is an absolute mega star, always there for me. Remember cancer cannot be spread, people must realise he’s the same person as he was before, do not hide this fact let family know it’s good to have friends at a time like this.

Stay Safe

Joe

Hi Anna42 

welcome to the forum, you will find lots of people that are in a similar position and hopefully they will share information that will be helpful to you. These first weeks are terrifying, but as you move through the appointments and treatment options things will settle into place where you will both feel a lot calmer as you understand more. My husband was diagnosed and initially treated in a small market town hospital. We decided to seek a second opinion in what we personally felt was the best Hospital in the UK which was the Royal Marsden London and he now has treatment from an Addenbrookes/ Cambridge based consultant and also has had treatment at the Genesis Care centre Newmarket. A bit of a mix, but all of these hospitals and centres have been excellent to dip into. We moved about because there were treatments that we wanted and they weren’t available at our local hospital, This was our journey and of course there are many other excellent hospitals in the UK.  I think a second opinion is a good idea as it can widen the options sometimes.  We made our journey harder really and possibly it was unnecessary,  but we are happy with where Mr BW’s is at the moment and have learnt a lot. 
if you tap on my profile picture you can read Mr BW’s journey so far. When he was first diagnosed I was so frightened, I believed at that time that he would be dead within a year, which now seems ridiculous. Two years later he is well and actually fitter than he’s ever been. Gathering information on treatments, drugs and different options will be very helpful  when you sit down and have discussions about the way to go. I hope this helps 
Best wishes to you both 

Lx

Thanks for taking time to respond Joe, that’s really reassuring and I’m glad you’re remaining positive and strong. Yes we’ve been honest with friends and family. It’s hard but we’re massively appreciating all of the love and support xxx

Hi Anna 42

Its good people know, the people on here are ladies and gentlemen, there’s lots of ladies on here, always prepared to chat, as to the guys. We’re not doctors, it’s just what we’ve gone through, plus the ladies know what we go through. Try always to go with your OH to any appontments., as two people are better listening to the Onocologist or nurse.

Stay Safe

Joe

Thank you so much. I’m definitely in terrified territory and struggling to see what life will look like following this diagnosis, but I’m so glad I reached out on this forum and I am starting to slowly get a clearer idea of what ‘treatable but not curable’ means - although the uncertainty is so hard. We’re looking at the Royal Marsden, so that’s reassuring too. Do you mind me asking how the second opinions work? I take it it’s fairly common? Thanks again for taking the time to respond xxx

Hello Anna (Anna42) 

Another warm welcome to the Macmillan Online Prostate Community from me, although I am very sorry to see you joining us. I am Brian one of the Community Champions here, on my 4th year on my personal Prostate Cancer journey.

Yes it's treatable but not curable and yes people are living longer and still having a good quality of life. 98% of men with Prostate cancer die WITH it not OF it.

You have had some great replies above, all I can say is the diagnostic stage is the hardest part of the journey and things will get better. Ask any questions you need, however trivial, you will get answers.

Just in case you haven't already spoken to the children, here's some information that may help;

Talking About Cancer To Young Children and Teenagers.

If I can do anything for you please let me know.

Best wishes - Brian.

Hello Anna42

Although a second opinion will be the same, having another is always helpful.

In my case, I had an excellent diagnosis from a professor. There I was put on medication followed a couple of months later, chemotherapy, then a break and twenty treatments of radiotherapy.

Stay Safe

Joe

Thanks so much for this - really appreciated 

Hi Anna, 

Mr BW had most of his tests - Ct, MRI, Bone scans at our local hospital . His actual treatment plan meeting was set for nearly 4 months after initial diagnosis which we were not happy with. So I phoned the Royal Marsden for a second opinion appointment . ( this was actually going to be our first opinion ) This is something you can pay for or if you have health insurance it will be covered . We then asked our GP to send all the results through to the consultant at the RM. ( Or I believe the RM will request them for you if you want  ) They are lovely on the phone and will tell you exactly what you need to do. This was the best thing we ever did, because I was nearly out of my mind thinking we would have to wait so long to talk to a consultant . Our GP was excellent and also really annoyed at our wait and sent everything through instantly. We had an appointment a week later. It was so different, we were treated so well, we were offered a PET Scan and a genetics test. We sat down with our consultant for an hour and she walked us through what was happening and showed us the scans and the cancer. We discussed available drugs and treatments, because not everywhere will offer certain drugs or have the same machinery/ scanners etc. We discussed Radiotherapy and Chemo and combinations. We talked about their research and what she felt was the best route. It was amazing . We had her personal email to ask any questions. It was really what we needed at that time. We felt safe and listened to.

if you go to their website there will be information about second opinions and a contact number. Give them a ring tomorrow and have a chat .  
x

Hi Anna 

Im incredibly sorry you find yourself in this position but so glad you have found this forum as you will it an amazing place where people are so knowledgable and understand your feelings. 

My husband aged 58 last year was diagnosed Gleason 9 but with hopefully no metastasis. I can understand how frightening being told that it is not curable must be but from the past months of reading lots of people here with stage 4 like your husband I can only say how far treatments have come even for advanced cancer. I’m sure he will get some great treatments. 

If I was in your position I would certainly at least look at two opinions as there are so many new advances that you would not want him to miss an opportunity of even more advanced treatment! 

Very Best wishes to you 

A