Just diagnosed

Hello Grantyo12  Welcome to our little part of the Community.

All is not lost and there are plenty of treatments for your condition - you are already on HT and that will put a stop to any further spread/growth.

I was like you with my original diagnosis - a higher PSA and it's in my pelvic lymph nodes  - I am a Gleason 9 T3aN0M0 bur on a "Curative Pathway". Yo do need to wait for the original diagnosis but for a bit of inspiration have a read of my journey (click on my avatar for this). I have had issues - but i am winning.

Feel free to ask any questions and join in with any conversations - we are a decent bunch.

Best wishes - Brian.

Thanks. I read your journey last week and thankyou. It’s one of the stories that really helped me yesterday! 

Hi Grantyo12 .

A warm welcome from a wife whose husband is Gleason 9, T4 with both pelvic and abdominal lymph node spread, diagnosed in July 2020. I think we can all relate to the day of diagnosis being the worst day of our life and you feel as if you are on a neverending rollercoaster until all the tests have been done, a treatment plan has been put in place, and you have got through the first round of treatment. Things do settle down then and life goes on. 

One thing I would add to what Brian has already said is to try and push for the bone scan as soon as possible as the Bicalutamide can interfere with it, hopefully you will get a date through quickly.

For hubby the pelvic radiotherapy in 2020 was, and remains, successful. Routine testing has identified very quickly when problems have flared up in the distant mets and have been dealt with. This group will give you the emotional support if you want it, as well as help you through the different treatments and side effects. It is also a place for a laugh on occasion as well as providing pointers on anything that might affect your life as a result of being diagnosed with cancer. No questions are off limit so please ask anything and someone is bound to come back with some nuggets of information.

You are still a young man and should have many years ahead of you no matter what the diagnosis.

Thanks, that’s very reassuring. I’m not really sure who I would push the bone scan with? Hospital, McMillan contact? any suggestions would be helpful. 

One question I have I started taking the Bicalutamide yesterday and woke up with a headache this morning and a bit brain foggy. Is that normal side effects? 

The side effects you are describing are common when you start on Bicalutamide. They shouldn't last very long but if they do then report it. Paracetamol for the headache if you can take it. 

For the bone scan I hope Millibob , Brian can advise you better as we are not UK based.

Thanks that’s great!

Hi Grantyo12

Good afternoon it's great to meet you today I am very sorry to hear about your diagnosis of P/C.

Yes I am also in the "Terminal Club" my PCA was initially "1000+" and things were very difficult at time of diagnosis.

I have been on "Hormone Therapy" since last June and my PSA is now down to 0.2 "Crazy"

You will find many members in the same "SHIP" 

Please please have a good look around and come back to us with any questions/concerns & I am sure someone will be able to help and support you.

Prostate Worrier.

Thanks, wow 1000 that is high, I didn’t even know what a PSA score was until 3 weeks ago but now we’re intimately aquinted!  

HelloGrantyo12  The bone scan will be arranged by your Urology Team so that should be your first point of contact.  I hope this helps.

Best wishes - Brian.

Hi Grantyo12,

There's not a lot I can add as you have some very sound advice being given. I will say that you seem very close to my partner in diagnosis, he initially was on a curative pathway but is now :"treatable" and doing very well. you could read his profile, but remember everyones cancer is different and what applies to him is his personal journey and yours will probably be different. The medications are worth knowing and reading about though as you will become more informed. Like Alwayshope says, it's important to push for any scans as the HT can interfere with results especially if it has spread out of the prostate. You should have a contact number for a nurse or support. If you can get a PSMA PET scan, that tells a lot about possible spread. My partner had one but they said because he had been on HT for a few weeks it could shrink back any signs of minute metastatic activity so it may not be visible any more, which was the case. Worth asking the question though.  Did you have a number to ring? They may just reassure you that you are already on the right path and they don't need extra information, but nothing is lost by asking. It''s really important to not be afraid to ask questions, even if they may turn out to be wrong in some way as this is how you will understand more about your cancer. I always go to meetings with my partner and I have a list of questions that we have thought about over in the months before. It's rather funny because after they have had a chat the consultant says, :"any questions?" and looks at me and I reel them off. It's handy to take someone with you as it's easy to forget once you get into that chair, your mind can go blank. Ask any questions here as well. This is a lovely forum with great info and people., 

Best wishes

L